Monday
Its morning at last and after a tough night I am still in pain. I get thinking though, that if it is just my stomach needing to heal now, and that all can be done is to administer pain relief, and since I am now white cell healthy (they are above 2 not sure by how much), then perhaps the doc will agree to let me home if i ask nicely?!
When the doc arrives on his ward round, he beats me to it as the first thing he tells me is
"Well I think you can go home if you want!" I let out a cheer!
We then discuss other aspects.
Apparently I may have a hickman line infection. A bug which is associated with Hickman line infections was isolated in the blood samples taken following the start of my fever the week before. More evidence is that it was found in the line sample but not seen in the arm sample. (they culture blood samples from your arm and from the hickman line for bacteria) . This would be a bad thing, as I dont want to lose the Hickman line this close to the end of treatment. Fortunately one of the three antibiotics they hae been giving since the fever was identified was Tagoplanin - the correct one for the job. So what it means is I need to continue on that, so will need to come in every afternoon to have this injection.
The next news is that the next cylce, no 4 and as cycle 2 the IVAC-R protocol, will be scheduled to start on Monday (2nd March). This will be the final planned cycle. It will be a busy day: blood tests for checking bone marrow compatibility with my brothers marrow donors just in case it is needed, a heart stress test, and then then day one of treatment itself starting in the afternoon. Cool - no point messing about!
I ask more about what happens after treatment finishes. Apparently I will get monthly blood tests which will let us know if there is a relapse. No cunning cancer marker detection will be used, which whien used can thoeretically detect minute traces from specific entities in the blood. This I am told is not helpful for my particular leukemia, so fair enough.
So this is great and a huge bonus, I am going home for a WEEK!
After the good news on these "release days" I generally find the day to be tiring and stressful. I am so eager to get home I always try to speed up the process, or at least prevent delays. I call dad and ask him to go through my home drug store so that I can tell the phamacisit what I need and what I do not. This is part for Karma of not wanting to waste NHS funds on extra drugs, and partly because the more drugs you order the higher the chances their delivery to the ward will be delayed! I frustrate the Nurses by constantly asking when I am due to go and that I have cetain injections due in the afternoon - as if they didnt know already. Martin in hyper mode is a scarey thing for others!!!
I then get paranoid I am developing a fever. My temp was 36.0 first thing, then 36.7 followed by 37.3. Thats would be ok, but I feel hotter and sweat heaps as the day goes on (it was a hot day on the ward). What if I am tested again before I am discharged? If my temp is over 38 I would most likely lose my freedom. No no no no please stay down!
By 6 all my drugs, and Michelle, have arrived. We pack up, get my instructions from the nurses and I leave with the biggest smile on my face ever :)
Back home Mum has cooked supper. A family favourite, fish pie, but i can barely taste it and my stomach complains and spasms. I realise that while being home will be great, I am so much weaker and in more discomfort than on any other visits home. But i know i am in the right place. So the evening is painful, my stomach giving a fire like pain because of the Mucositis. After some food I try to hang on in for the evening, but have to give up and head to bed to fight it out.
Tuesday
After a painful and fitful nights sleep, I am tired but delighted to be waking to Dawn in Fittie. As Michelle readies for work I go for a brief cup of tea to the beach - my favourite pilgrimage. It is so good to be at home despite the pain. Freeeeeedom!
M&D and some friends pop in in the morning, I get a brief kip before dad picks me up for the hospital. The first clinic visit is quite funny, as no one knows where my medical record have gone and ask me what I need! Eventually the mystery is solved and I get my injection. Bump into docs and ask about laxatives, they recomend I continue with the senna on every day (ouch!!). Am taking the senna at the mo, and let just say it works no problem within one dose so it seems, but I am pretty sure it adds to my pain as cramps. So I am not convinced I will take it every day. I decide also to test myself out with pro-biotic yoghurts, if there is any case for them it must be for someone like me with a nuked degestive system!
Food is also problem, I still have little urge to eat. I have lost a lot of weight, I am now below 10 stone! I can't say there is anything I want to eat particulary so have to just force food down, and then it generally aggrevates the old stomach. It doesnt help that nothing tastes "normal" thanks to the chemo nuking my taste buds again. But the good thing is that being home I get freedom to choose what I try, and when so I can have smaller meals more often. I'll be treating food at first as a refueling task to get my wieght and strength back on track.
I get the same old camps and pains in the evening, especially after eating. So while this is my "holiday" part of me wishes to jump to the next day (with more sleep and healing).
Wednesday
I do sleep well, but only until 5. My brain is now lit up and stomach keeping me awake. I get up and write an email to my grand aunt, who I miss and who lives in Africa, who I have wanted to write to for ages. Back to bed I resolve to have a slower day!
Up. Have visits from parents and friends through the day, and enough time for a short siesta, with Buttons curled up and purring away!
The clinic today is amazing, the nurses are so cool they have my injection ready prepared, we arrive and I am treated and out of there faster than a Lewis Hamilton pit stop. I am beaming and thank them profusely. Dad is cuffed too as he is rewarded for his optimism that we will be fine parked in a 30 min bay!
I leave energized with extra time on our hands, so as it is a beautiful afternoon we have a walk around the South Don headland on the way home. Great to do something normal, but why did i forget my beanie - ice cream headache!!! I see a small wave on the Don and have an urge to get a waveboard and test it out - good to find that urge still there....
Same as most days though, by evening I am in most pain and its hard to relax.
Thursday
Definitely feeling bit better, pain is less severe and less frequent. Catch up with email - it is amazing how long that takes, but its so rewarding catch up with friends i would consider it part of my therapy. Eggs and toast my new idea for protien and energy boost. (hm maybe I should be trying the Laird Hamilton breakfast of eggs white and oat meal, wonder id he'd reply with the recipie...)
Activity continues all day, Was fairly active in that did not
Mid eveneing I am not so bad but still crash and in pain, so pain killers and bed required!
Friday
Hey I am now up to date! Feeling better still today, at least from bed where i am writing this! Maybe I'll try fixing the car which broke down again on Dad when he went to play golf - poor guy is jinxed - I warned him old surf mobiles are notoriously fickle!
Friday, 27 February 2009
Sunday, 22 February 2009
Where's the fast forward button?
If it was not for the Metho i think id be feeling OK by now. but of course that was the whole point of being in this state!
OK, so how it has panned out this time, the damage from Methotrexate has been to my mouth, nose lining, stomach and intestine. my stomach got away lightly the first time, but now seems to have taken the brunt of it. this is soo painful - a burning sensation, which can be mild or as severe as cramps. sometimes i can move around OK, this night i woke feeling OK so got outa bed to do that thing and felt like i dropped battery acid into an open would in my stomach. lay down quick. didn't subside, so called for the nurse for morphine. that eased it for a while. but now it is still too painful to sleep. (hence writing this)
I am assured that, just like in the first cycle, this will all heal with the help of the white cells. so just need more time. Boy i wish i could fast forward a few days!
So you can imagine i am not too chatty at the moment, so have not been keeping up to date replying to you all.
Thank you everyone who has been in touch, whether by letter, email, blog, facebook, phone or visiting. you all help enormously boost me through these dark partches, which yes are bad, but with everyone's support and my determnation i will come through. As Claire reminded me,
Lance said: "Cancer, you picked the wrong guy"
OK, so how it has panned out this time, the damage from Methotrexate has been to my mouth, nose lining, stomach and intestine. my stomach got away lightly the first time, but now seems to have taken the brunt of it. this is soo painful - a burning sensation, which can be mild or as severe as cramps. sometimes i can move around OK, this night i woke feeling OK so got outa bed to do that thing and felt like i dropped battery acid into an open would in my stomach. lay down quick. didn't subside, so called for the nurse for morphine. that eased it for a while. but now it is still too painful to sleep. (hence writing this)
I am assured that, just like in the first cycle, this will all heal with the help of the white cells. so just need more time. Boy i wish i could fast forward a few days!
So you can imagine i am not too chatty at the moment, so have not been keeping up to date replying to you all.
Thank you everyone who has been in touch, whether by letter, email, blog, facebook, phone or visiting. you all help enormously boost me through these dark partches, which yes are bad, but with everyone's support and my determnation i will come through. As Claire reminded me,
Lance said: "Cancer, you picked the wrong guy"
Friday, 20 February 2009
quick update
This is proving a very tough week n half, so please excuse the lack of updates here. i am still not up to much so will keep it short. The pain is intermittent and if i stay at the right angle not bad, so lets try get some of this down!
I came back to the unit Thurs night to be IV dripped with the bicarbonate. Methotrexate chemo started Friday morning through the twin IV line. From outset i had an added problem - my abdomen was swollen and painful. Most likely i was constipated from the chemo drugs the week before, so they increased the laxatives i was being given. I was fed up as had made a conscious effort to avoid repeating this from cycle 1. Metho finished on sat morning, and bicarb drip continued. From late sun i started flonic acid therapy, that ceased on weds. Then one spinal injection yesterday.
So that's the therapy sorted, but in the mean time i have been lying groaning like the greediest person on Xmas evening who just couldn't stop at the turkey, you know the feeling? i am not sure i will ever over eat again! My stomach was an impressive size - should have had a camera. It reminds me of a game we used to play after a massive meal in the "animal" house: who could push their gut out the furthest? John, Ian, Ben and myself were always close, Tony however won every time on extremes - as his went furthest in than anyone!
joking apart though every minute has been a struggle, as unlike Xmas the swelling never went down.
Like before in cycle one ("Soda Bomb") i got pretty alarmed when they tripled the levels of bicarb in the drip. This is because my blood was a bit acidic. I kept thinking "can my body really take ALL this s#'t?". I am still wondering.
Added is that this cycle the Metho has directly effected at least my stomach. Feels like fire much of the time, and then has deep stab/shooting pains which can be hard ot stop. Was like this til Weds. Nothing improved until then, when after a rethink on Tues i was given senna to "push". First dose was midnight tues and i upped the ante with a bowl of stewed prunes weds morning, something I have never eaten them before. After a busy day lets say there had been a success in that area!
So that is good and has given me some relief, but no let up in the cramps and stomach pain.
Mouth is decayed but not as bad as the first time.
I came back to the unit Thurs night to be IV dripped with the bicarbonate. Methotrexate chemo started Friday morning through the twin IV line. From outset i had an added problem - my abdomen was swollen and painful. Most likely i was constipated from the chemo drugs the week before, so they increased the laxatives i was being given. I was fed up as had made a conscious effort to avoid repeating this from cycle 1. Metho finished on sat morning, and bicarb drip continued. From late sun i started flonic acid therapy, that ceased on weds. Then one spinal injection yesterday.
So that's the therapy sorted, but in the mean time i have been lying groaning like the greediest person on Xmas evening who just couldn't stop at the turkey, you know the feeling? i am not sure i will ever over eat again! My stomach was an impressive size - should have had a camera. It reminds me of a game we used to play after a massive meal in the "animal" house: who could push their gut out the furthest? John, Ian, Ben and myself were always close, Tony however won every time on extremes - as his went furthest in than anyone!
joking apart though every minute has been a struggle, as unlike Xmas the swelling never went down.
Like before in cycle one ("Soda Bomb") i got pretty alarmed when they tripled the levels of bicarb in the drip. This is because my blood was a bit acidic. I kept thinking "can my body really take ALL this s#'t?". I am still wondering.
Added is that this cycle the Metho has directly effected at least my stomach. Feels like fire much of the time, and then has deep stab/shooting pains which can be hard ot stop. Was like this til Weds. Nothing improved until then, when after a rethink on Tues i was given senna to "push". First dose was midnight tues and i upped the ante with a bowl of stewed prunes weds morning, something I have never eaten them before. After a busy day lets say there had been a success in that area!
So that is good and has given me some relief, but no let up in the cramps and stomach pain.
Mouth is decayed but not as bad as the first time.
Thursday, 12 February 2009
unplanned R&R in snowy Fittie
Generally I can report a bumper pot of relatively good health so far this week.
Over the weekend I got to watch (between chemo sessions which just happened to be scheduled around 3 :() the rugby. My neutraphil army I'd hazard put in a far superior performance than either England or Scotland managed, but sadly were not rewarded by any of the agreed junk food they had expected! (I was hoping for a food supplement of a BK or two bought in to supersize me a little before the Methotrexate kicks in). Off ward when blood healthy you can eat most things you like - on ward even non-neutralpenic, there is sufficient H&S regs to see a cold cheese burger relegated to the bin along with any hopes of a grand slam! Never mind, just remind myself I was only talking JUNK food! So who am i kidding - it wasn't going to help therapy!
I was shocked as Hammy to find England at the top table on Sunday, but for me at least it was all fun!
Added a new side effect for this round on Monday, heart pain again is back, like in the first cycle. But once checked with the docs and compared it to the round one it is prob nosobad.
As I was still pinned to the IV pump, but feeling a little more energetic, on Monday I tried "tethered" stair climbing. Basically you place iv pump at bottom of stairs, go up 6 six, come down six. Quite fun really, certainly have to use more coordination to get the height in. I see a new form for strictly dancing with IV pumps down the main central stair. Unsurprisingly i did not count, but my heart was no worse off for it and it boosted my energy for the rest of the day.
Tuesday morning and I was off the IV for first time in days. It takes ages to compensate - i still think i am connected and "bounce" i.e. stop a few feet from my bed when going to get something!
Stair climbing was easier: 46 floors in 30min ish - seems to equate to 200m. Hmm maybe Bennahie over a day would be fun before I leave........(ooops remembers physio voice saying to calm down....oh, ok, ok).
Docs decided on Tues in fact I was healthy enough that I could do the next two days as a pass patient (ie just come in for treatment), so that's what we did. Left ward Tuesday lunch, tests weds lunch, and will finally return this eve for preparation for the methotraxate round three big bang. (this bit is mentioned earlier - but my blood needs to be boosted alkaline so that the metho will not cause damage by making it too acid during treatment.)
ok, lets try some more sleep!
Martin
Over the weekend I got to watch (between chemo sessions which just happened to be scheduled around 3 :() the rugby. My neutraphil army I'd hazard put in a far superior performance than either England or Scotland managed, but sadly were not rewarded by any of the agreed junk food they had expected! (I was hoping for a food supplement of a BK or two bought in to supersize me a little before the Methotrexate kicks in). Off ward when blood healthy you can eat most things you like - on ward even non-neutralpenic, there is sufficient H&S regs to see a cold cheese burger relegated to the bin along with any hopes of a grand slam! Never mind, just remind myself I was only talking JUNK food! So who am i kidding - it wasn't going to help therapy!
I was shocked as Hammy to find England at the top table on Sunday, but for me at least it was all fun!
Added a new side effect for this round on Monday, heart pain again is back, like in the first cycle. But once checked with the docs and compared it to the round one it is prob nosobad.
As I was still pinned to the IV pump, but feeling a little more energetic, on Monday I tried "tethered" stair climbing. Basically you place iv pump at bottom of stairs, go up 6 six, come down six. Quite fun really, certainly have to use more coordination to get the height in. I see a new form for strictly dancing with IV pumps down the main central stair. Unsurprisingly i did not count, but my heart was no worse off for it and it boosted my energy for the rest of the day.
Tuesday morning and I was off the IV for first time in days. It takes ages to compensate - i still think i am connected and "bounce" i.e. stop a few feet from my bed when going to get something!
Stair climbing was easier: 46 floors in 30min ish - seems to equate to 200m. Hmm maybe Bennahie over a day would be fun before I leave........(ooops remembers physio voice saying to calm down....oh, ok, ok).
Docs decided on Tues in fact I was healthy enough that I could do the next two days as a pass patient (ie just come in for treatment), so that's what we did. Left ward Tuesday lunch, tests weds lunch, and will finally return this eve for preparation for the methotraxate round three big bang. (this bit is mentioned earlier - but my blood needs to be boosted alkaline so that the metho will not cause damage by making it too acid during treatment.)
ok, lets try some more sleep!
Martin
Saturday, 7 February 2009
England and Irn Bru
Feeling generally better today, although I found a new side effect today when i bit into my morning toast. Massive jaw pain when i bite! (something is conspiring to restrict my eating this cycle). Thinking back I had jaw pain in the first few days of th efirst cycle, which i thought meant i needed the dentist! So painful but nothing to be concerned about.
Well today is actually loads of fun. Watching the rugby which drinking Irn Bru with a chaser of Cyclophosphamide, mmmmmm, I love the taste of mustard gas in the afternoon, tastes of victory! I tell you won't get service like that in your local pub - and I can see the screen!!
The title today describes the state of my Anglo-Pict (!) transition. You can never take England of the man, but he may well end up waering tartan jammies, drinking Irn Bru and understanding Chewing the Fat!
Well hope you enjoy it too, and the fact i have had no emails from Ali confirms the score is ..... oh its changing so quick...... 22-6 !
Martin
Well today is actually loads of fun. Watching the rugby which drinking Irn Bru with a chaser of Cyclophosphamide, mmmmmm, I love the taste of mustard gas in the afternoon, tastes of victory! I tell you won't get service like that in your local pub - and I can see the screen!!
The title today describes the state of my Anglo-Pict (!) transition. You can never take England of the man, but he may well end up waering tartan jammies, drinking Irn Bru and understanding Chewing the Fat!
Well hope you enjoy it too, and the fact i have had no emails from Ali confirms the score is ..... oh its changing so quick...... 22-6 !
Martin
Friday, 6 February 2009
hangovers without the fun
I am not referring to my time at home. That time was very nice, thank you very much. Although this trip home I DID find I was not entirely toxic to the odd glass of beer or nip, which for me is very encouraging (although one friend wondered why I was bothered???!). But still couldn't go enough to make a dent on my body that would all to my toxicity.
Nope this section is about chemo again. After a few nights at home, I was being prepped Monday (blood test) and Tuesday (kidney test) for the next session. Although I could stilll go home after, all the tests were first thing so no lazy lyin which I'd been hoping for!
No messing, cycle three of my chemo started 50 mins after I was back in the Ward on Wednesday morning. Cycle 3 is the same as cycle one but with a special bonus - it started with the mouse flu from the 2nd cycle. So in the last 3 days I have had 5 intravenous chemos and two extra into my spinal fluid. I've been checking my early entries on this blog to see if I detailed the side effects. This time round I am mainly very tired, and getting a bit frustrated with myself for being so tired while seemingly doing nothing.
My mouth is also degrading again - it is feeling dried out (like early in the first treatment) and there is already some soreness. But I'll consider this a warm up for the methotrexate grudge match in a weeks time!
Oh yes and sickness - another treat. Even hospital sprouts could not tempt me last night. But there are some good pills which reduce this.
This is all accompanied with a fair share of headaches, of which there are so many reasons, so its not a worry just a pain
All in all, particularly with the dry mouth - this adds up to what most would describe as a hogmanay hangover! (or maybe Balti hangover considering the sickness). Trouble is - where was the fun? ha ha!
But honestly this is all cool. My feelings are that I am here to be hit hard, and I actually felt a bit cheated by cycle two as I completed it relatively quickly and painlessly. I just finished Lance Armstrong's book "Its not about the Bike", and one of many things I related to was that he too was less reassured by treatents which his body took on without much pain. So I doubt cycle three will disappoint me! Hopefully I am well prepared for whatever it has in store. The main chemo continues until next friday (day 10 metho day), which means the methos big bang will hit prob hit from the 15th for a week or two.
Anyway looking forward to watching the rugby tomoro, I'll pretend it is with a real hangover, maybe get some Irn Bru in! Who ever wins it should be great and a good change from "Victorian Farm" (arrghh dont ask, the joys of sharing a ward room!).
Lastly, Hammy Congratulations!! I shall get this body in order ASAP!
Martino
Nope this section is about chemo again. After a few nights at home, I was being prepped Monday (blood test) and Tuesday (kidney test) for the next session. Although I could stilll go home after, all the tests were first thing so no lazy lyin which I'd been hoping for!
No messing, cycle three of my chemo started 50 mins after I was back in the Ward on Wednesday morning. Cycle 3 is the same as cycle one but with a special bonus - it started with the mouse flu from the 2nd cycle. So in the last 3 days I have had 5 intravenous chemos and two extra into my spinal fluid. I've been checking my early entries on this blog to see if I detailed the side effects. This time round I am mainly very tired, and getting a bit frustrated with myself for being so tired while seemingly doing nothing.
My mouth is also degrading again - it is feeling dried out (like early in the first treatment) and there is already some soreness. But I'll consider this a warm up for the methotrexate grudge match in a weeks time!
Oh yes and sickness - another treat. Even hospital sprouts could not tempt me last night. But there are some good pills which reduce this.
This is all accompanied with a fair share of headaches, of which there are so many reasons, so its not a worry just a pain
All in all, particularly with the dry mouth - this adds up to what most would describe as a hogmanay hangover! (or maybe Balti hangover considering the sickness). Trouble is - where was the fun? ha ha!
But honestly this is all cool. My feelings are that I am here to be hit hard, and I actually felt a bit cheated by cycle two as I completed it relatively quickly and painlessly. I just finished Lance Armstrong's book "Its not about the Bike", and one of many things I related to was that he too was less reassured by treatents which his body took on without much pain. So I doubt cycle three will disappoint me! Hopefully I am well prepared for whatever it has in store. The main chemo continues until next friday (day 10 metho day), which means the methos big bang will hit prob hit from the 15th for a week or two.
Anyway looking forward to watching the rugby tomoro, I'll pretend it is with a real hangover, maybe get some Irn Bru in! Who ever wins it should be great and a good change from "Victorian Farm" (arrghh dont ask, the joys of sharing a ward room!).
Lastly, Hammy Congratulations!! I shall get this body in order ASAP!
Martino
Saturday, 31 January 2009
goala!
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.
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.
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.
Tuesday, 30 December 2008
Sprouts
"Do you like hospital food?"
Normally used as a threat rather than an actual question. So if your answer was
"Actually today I did like the sprouts", it would probably be followed by a visit to the dentist for some remedial work.
Chemo does some very strange things to your taste buds, and it seems to change unpredicably from day to day. Last week I was convinced I was given Salted Rhubarb pudding. Not recomended.
Today, I not only braved NHS brussels for the second time of my stay, first were obligatory xmas day ones, but came to the conclusion they were the best part of the meal.
Normally used as a threat rather than an actual question. So if your answer was
"Actually today I did like the sprouts", it would probably be followed by a visit to the dentist for some remedial work.
Chemo does some very strange things to your taste buds, and it seems to change unpredicably from day to day. Last week I was convinced I was given Salted Rhubarb pudding. Not recomended.
Today, I not only braved NHS brussels for the second time of my stay, first were obligatory xmas day ones, but came to the conclusion they were the best part of the meal.
Monday, 29 December 2008
Lucozade - aids insomnia
In retrospect, reaching for the Lucozade bottle was a bad idea.
It was 4ish and the night had been hard work so far. A blur of tangled tubes,wires and pumps which were filling me with chemo and fluids, to make hourly visits to the sample room to rid myself of them.
Maybe it was an accumulation of mistakes. I had neglected to keep my water bottles refilled the night before and so earlier had had to reach for the 50s Tupperware beaker of water. An experience I didn't want to repeat. I lay awake and remembered the half drunk Luco bottle bought in by one of my visitors (thanks to all of you so far by the way - it has been brilliant, both the visits and calls). Took a sup. Warm and fizzy (eerk lets hope I got the right container). Rolled over for more kip. Hmm that tastes alright I'll have some more, feel warm inside now and headache gone. Cool. Now sleeeeeep....
"Must cancel gym membership" "get the house fixed" ... "shut up! sleep!"
Its now 5am. On the plus side the lucozade stopped my early morning headache,but I now have to get some of these thoughts out of my head. I ban myself from turning on the laptop, like the night before. I have discovered the art of night time note book jotting. The lights are off, but the pen seems to be on the paper not the bed sheet. This is great, I never new I could write so fast. Should have tried this years ago for midnight revelations.
I pen a list of things to do next week, and then next month. I write a load of this blog. An email. Another one. Argh stop it, enough! See if I can get 2 hours more sleep before morning....
Oopps. It is now 7:30, and have been on the laptop since six! I am now trying to transcribe all these pages of notes. Each page took around a minute to fill, a revelation! However all the pages are unintelligible, and so are taking more like 15 mins to read and retype. The bits I can read that is, was I sleep scribing? Motty, when you read this, I think I have just found the secret weapon of our old mate Dave the Medic. (this guy had officially unreadable writting so was allowed specialists to transcribe his finals after each exam - he could have written War and Peace in that time - genius!).
Onto my progress, until the addition of Luco I was close to getting depressed last night, round the clock urination every 50 mins was messing with my head.( but maybe good training for endurance?). Anyway my PH went upto 8 last night which is good news for the Lemonchello treatment. [side note: am feeling very smug. I just found out I managed 10.2 litres of piss on christmas day, very fitting for a day of excess]
So viva Lucozade. Bad call by me but,but was a good effect. If its not on your plan already I recomend you put a bottle by your bed ready for Hogmanay. I swear it'll work wonders on the headache and you'll have planned how to do all next years resolutions by first light.
It was 4ish and the night had been hard work so far. A blur of tangled tubes,wires and pumps which were filling me with chemo and fluids, to make hourly visits to the sample room to rid myself of them.
Maybe it was an accumulation of mistakes. I had neglected to keep my water bottles refilled the night before and so earlier had had to reach for the 50s Tupperware beaker of water. An experience I didn't want to repeat. I lay awake and remembered the half drunk Luco bottle bought in by one of my visitors (thanks to all of you so far by the way - it has been brilliant, both the visits and calls). Took a sup. Warm and fizzy (eerk lets hope I got the right container). Rolled over for more kip. Hmm that tastes alright I'll have some more, feel warm inside now and headache gone. Cool. Now sleeeeeep....
"Must cancel gym membership" "get the house fixed" ... "shut up! sleep!"
Its now 5am. On the plus side the lucozade stopped my early morning headache,but I now have to get some of these thoughts out of my head. I ban myself from turning on the laptop, like the night before. I have discovered the art of night time note book jotting. The lights are off, but the pen seems to be on the paper not the bed sheet. This is great, I never new I could write so fast. Should have tried this years ago for midnight revelations.
I pen a list of things to do next week, and then next month. I write a load of this blog. An email. Another one. Argh stop it, enough! See if I can get 2 hours more sleep before morning....
Oopps. It is now 7:30, and have been on the laptop since six! I am now trying to transcribe all these pages of notes. Each page took around a minute to fill, a revelation! However all the pages are unintelligible, and so are taking more like 15 mins to read and retype. The bits I can read that is, was I sleep scribing? Motty, when you read this, I think I have just found the secret weapon of our old mate Dave the Medic. (this guy had officially unreadable writting so was allowed specialists to transcribe his finals after each exam - he could have written War and Peace in that time - genius!).
Onto my progress, until the addition of Luco I was close to getting depressed last night, round the clock urination every 50 mins was messing with my head.( but maybe good training for endurance?). Anyway my PH went upto 8 last night which is good news for the Lemonchello treatment. [side note: am feeling very smug. I just found out I managed 10.2 litres of piss on christmas day, very fitting for a day of excess]
So viva Lucozade. Bad call by me but,but was a good effect. If its not on your plan already I recomend you put a bottle by your bed ready for Hogmanay. I swear it'll work wonders on the headache and you'll have planned how to do all next years resolutions by first light.
Sunday, 28 December 2008
Soda Bomb
I guess four good mights sleep in a row would have been too much to ask for! Back to waking after a few hours. Its dawn and am watching sunrise over Aberdeen from the ARI towers. This is a cool view.
The nurses told me last night that my Hg was 79 before my transfusion. I think they were 71 the day before, so could that mean I actually have some improving red cell production already? I hope so. My white count is zero, but that's OK as the doc said all my whites were the bad cells anyway. What I have apparently are non-African, non HIV, acute Burketts lymphoid cells. They are a very aggressive type, and hence so is my treatment. Not sure if that will help you in a pub quiz but you never know :)
Ah, now found out from the doc that the cell count never went to 71, it stuck on 79. Never mind.
A busy day is planned. I have been on an alkaline saline drip for 24 hours now, to prep for Methotrexate. Nasty yellow stuff, it looks like but is not Lemonchello. The Metho will be shot-gunned with more bicarbed saline and runs for 24 hours. After that Folinic Acid is added to neutralise the stuff for 36 hours. This is hard core! Feel pretty bad when treatment starts, but seemed to have gotten used to it.
They have to up the bicarb so to keep my blood from getting acidic.
It works, but start I wondering whether if I jumped off my chair would I blow up like a bicarb soda bomb!
or like Mr Creosote.
"just one more little waffer" .....
I decide to move smoothly for the rest of the day. Just to be safe.
The nurses told me last night that my Hg was 79 before my transfusion. I think they were 71 the day before, so could that mean I actually have some improving red cell production already? I hope so. My white count is zero, but that's OK as the doc said all my whites were the bad cells anyway. What I have apparently are non-African, non HIV, acute Burketts lymphoid cells. They are a very aggressive type, and hence so is my treatment. Not sure if that will help you in a pub quiz but you never know :)
Ah, now found out from the doc that the cell count never went to 71, it stuck on 79. Never mind.
A busy day is planned. I have been on an alkaline saline drip for 24 hours now, to prep for Methotrexate. Nasty yellow stuff, it looks like but is not Lemonchello. The Metho will be shot-gunned with more bicarbed saline and runs for 24 hours. After that Folinic Acid is added to neutralise the stuff for 36 hours. This is hard core! Feel pretty bad when treatment starts, but seemed to have gotten used to it.
They have to up the bicarb so to keep my blood from getting acidic.
It works, but start I wondering whether if I jumped off my chair would I blow up like a bicarb soda bomb!
or like Mr Creosote.
"just one more little waffer" .....
I decide to move smoothly for the rest of the day. Just to be safe.
Saturday, 27 December 2008
Room with a view
Saturday, believe it or not its already on day 9 of my treatment!
Pretty good night sleep, breakfasted. Feel alright. Was told last night my bloods are now pretty low, which I can notice anyway just by walking around as I get dizzy with mild head aches. You feel like you must have run to the toilet, and got lost, rather than walked a few yards. I wonder if this is what altitude sickness feels like.
As well as chemo there is a lot in store for today. I am now due for the first red blood transfusions this morning. Haemoglobin was around 70, maybe dropping 5-10 a day. Good I think is 180 upwards. I had wondered if they would wait as I seem ok but I guess it makes sense to start before I bottom out. [ooo-err that sounds nasty!!] I on the other hand am the type who waits for the tank to hit red before filling up! So lucky I am not in charge.
I decide it’s a shame not to use my bod for a bit of experimentation, so after breakfast I jump on the cycle machine to see how my body copes with mild exertion while having with a haemo level of around 70. Settings: ez-resistance level 1, 10mins at 8 mph. Av heart rate 121, total distance 1.3 miles, 45 cal. Didn’t feel so bad, but was tiring and could feel my heart. Chris Hoy shouldn’t be worrying.
I hasn’t taken long, but I think I am already fully institutionalised. So maybe all those years at public school really did serve a useful purpose. Life really seems quite pleasant. I have a new room with a new view. Some ones looking out for me because its high up, and facing south-easterly so views over the city down to the sea. At last the Laird of Fittie can keep an eye on his minions from up in his tower!
It’s a shared room of three, again with a flat screen TV donated by ANCHOR. Each room on this ward has one, but the size seems to increase depending on how many of us share the room. The single rooms had perfectly respectable 22 inch, the double room where I spent the last few days an impressive 26, and now this one has an awesome 32 incher! If it got any bigger we’d have to wheel our beds down the corridor to watch it. Only slight down side at the moment is we cant find the remote! lol!
Seriously though, word up from the inside. You would not believe how the little extras funded by ANCHOR have boosted my spirits. Actually some like the TV are big extras. that have been added to these big C wards to make our stay more pleasant. There’s been a few extra tea time treats, the LCD free view TVs in the rooms, and quite a few pieces of equipments. Now I am not yet going to start on the politics, but some of this equipment you would naively thought was essential anyway. So good on you Friends of ANCHOR. A lot of this fight is about positive attitude, so I am told. So when you give money to these charities that add an bit of extra spice and garnish to a person stay in hospital, I am telling you now it makes a HUGE difference. Friends of ANCHOR is a local Aberdeen charity, and the main principle to you out there is that while a small donation may not seem able to find a cure for cancer, it WILL make patients stay on these wards much nicer, which in fact could make the difference for their personal fight to the other side. So what an easy way for you to make a difference. I am intending to set up a fund raising scheme for ANCHOR, so I would be delighted if anyone like me feels its worth supporting. Details will follow in later weeks. In the mean time start saving your pennies!
Finally back to me, of course. Just noticed my mouth is beginning to feel like i've been eating ALUM, its dry rough and now bitter too. I so am wondering how bad this will get.
Only one way to find out – time.
----------------
evening update. Two bags of blood later, decided to take them for a test ride. So back on the bike repeating of this mornings workout. Av heart rate 104, total distance 1.5 miles, 47 cal.
So no need to send the new blood cells back, looks like they work :)
Pretty good night sleep, breakfasted. Feel alright. Was told last night my bloods are now pretty low, which I can notice anyway just by walking around as I get dizzy with mild head aches. You feel like you must have run to the toilet, and got lost, rather than walked a few yards. I wonder if this is what altitude sickness feels like.
As well as chemo there is a lot in store for today. I am now due for the first red blood transfusions this morning. Haemoglobin was around 70, maybe dropping 5-10 a day. Good I think is 180 upwards. I had wondered if they would wait as I seem ok but I guess it makes sense to start before I bottom out. [ooo-err that sounds nasty!!] I on the other hand am the type who waits for the tank to hit red before filling up! So lucky I am not in charge.
I decide it’s a shame not to use my bod for a bit of experimentation, so after breakfast I jump on the cycle machine to see how my body copes with mild exertion while having with a haemo level of around 70. Settings: ez-resistance level 1, 10mins at 8 mph. Av heart rate 121, total distance 1.3 miles, 45 cal. Didn’t feel so bad, but was tiring and could feel my heart. Chris Hoy shouldn’t be worrying.
I hasn’t taken long, but I think I am already fully institutionalised. So maybe all those years at public school really did serve a useful purpose. Life really seems quite pleasant. I have a new room with a new view. Some ones looking out for me because its high up, and facing south-easterly so views over the city down to the sea. At last the Laird of Fittie can keep an eye on his minions from up in his tower!
It’s a shared room of three, again with a flat screen TV donated by ANCHOR. Each room on this ward has one, but the size seems to increase depending on how many of us share the room. The single rooms had perfectly respectable 22 inch, the double room where I spent the last few days an impressive 26, and now this one has an awesome 32 incher! If it got any bigger we’d have to wheel our beds down the corridor to watch it. Only slight down side at the moment is we cant find the remote! lol!
Seriously though, word up from the inside. You would not believe how the little extras funded by ANCHOR have boosted my spirits. Actually some like the TV are big extras. that have been added to these big C wards to make our stay more pleasant. There’s been a few extra tea time treats, the LCD free view TVs in the rooms, and quite a few pieces of equipments. Now I am not yet going to start on the politics, but some of this equipment you would naively thought was essential anyway. So good on you Friends of ANCHOR. A lot of this fight is about positive attitude, so I am told. So when you give money to these charities that add an bit of extra spice and garnish to a person stay in hospital, I am telling you now it makes a HUGE difference. Friends of ANCHOR is a local Aberdeen charity, and the main principle to you out there is that while a small donation may not seem able to find a cure for cancer, it WILL make patients stay on these wards much nicer, which in fact could make the difference for their personal fight to the other side. So what an easy way for you to make a difference. I am intending to set up a fund raising scheme for ANCHOR, so I would be delighted if anyone like me feels its worth supporting. Details will follow in later weeks. In the mean time start saving your pennies!
Finally back to me, of course. Just noticed my mouth is beginning to feel like i've been eating ALUM, its dry rough and now bitter too. I so am wondering how bad this will get.
Only one way to find out – time.
----------------
evening update. Two bags of blood later, decided to take them for a test ride. So back on the bike repeating of this mornings workout. Av heart rate 104, total distance 1.5 miles, 47 cal.
So no need to send the new blood cells back, looks like they work :)
Friday, 26 December 2008
Stand clear of the doors
(I always thought James Mason recorded that for the underground, and if not he should have)
All aboard the Hickman line! Apparently though it is not tube link from Essex, but a semi permanent tube surgically inserted into a vien under the collar bone. This was inserted on tuesday eve, and has been a cause for paranoia. (i mean how can you take for granted a tube spouting out of your chest). It allows them to give and take chemicals and samples straight from the blood, and can stay in for months. So no more need for collapsing viens in my arms each day, sorry Sickboy, you'r on your own from here.
Marinate in iodene - done! The contrast during CT scan was intense. Way stronger feeling than any of the chemo injections so far. You feel certain organs fo rth efirst time as they take on a very hot sensation. And yes lads, some very important ones are effected!
[stuff to add here...]
oops Its now Friday already! Told you i am not good at these diaries. Will have to paste bits and peices together.
I didn't start this to get a Booker prize, just to hurl stuff out and mostly stop me repeating incidental daily guff to each freind. Despite what many might say I am not that fond of the sound of me own voice!
So merry Christmas, was santa good to you? were you good to him? I already know TKMax came up trumps for Ali.
Thanks to those who have already been in contact with me. It has been brilliant and overwhelming. The one single cool thing about this event has been catching up with so many great friends, but I really dont recomend this as a plan!
One more thing. Windsurfers are prone to this anyhow, but I have to
apologise for this most outrageous attempt so far at attention seeking! ;)
Enjoy the rest of your festivities.
All aboard the Hickman line! Apparently though it is not tube link from Essex, but a semi permanent tube surgically inserted into a vien under the collar bone. This was inserted on tuesday eve, and has been a cause for paranoia. (i mean how can you take for granted a tube spouting out of your chest). It allows them to give and take chemicals and samples straight from the blood, and can stay in for months. So no more need for collapsing viens in my arms each day, sorry Sickboy, you'r on your own from here.
Marinate in iodene - done! The contrast during CT scan was intense. Way stronger feeling than any of the chemo injections so far. You feel certain organs fo rth efirst time as they take on a very hot sensation. And yes lads, some very important ones are effected!
[stuff to add here...]
oops Its now Friday already! Told you i am not good at these diaries. Will have to paste bits and peices together.
I didn't start this to get a Booker prize, just to hurl stuff out and mostly stop me repeating incidental daily guff to each freind. Despite what many might say I am not that fond of the sound of me own voice!
So merry Christmas, was santa good to you? were you good to him? I already know TKMax came up trumps for Ali.
Thanks to those who have already been in contact with me. It has been brilliant and overwhelming. The one single cool thing about this event has been catching up with so many great friends, but I really dont recomend this as a plan!
One more thing. Windsurfers are prone to this anyhow, but I have to
apologise for this most outrageous attempt so far at attention seeking! ;)
Enjoy the rest of your festivities.
Wednesday, 24 December 2008
(*blog start*) If you want blood (You've got it!)
or
"More than an armful" (misquoted from Tony Hancock)
So here I am on Saturday morning 19th December 2008. 5:52 am and just off the phone with my brother in Oz. I've been a bit tearful - the wee Jesse that I am. Not much, and anyway does’nt mean much as only a week ago nearly blubbed watching a cinema screening of “It’s a Wonderful Life”. Ok lads I didn’t, but lets just say maybe I need to tap back into my primeval side – go hunting and keep out the kitchen except for reaching for a beer!
I said I wouldn’t do this. Ever, ever write a Blog. I’ve also recently been readying to leave the other scourges of modern Internet, facebook etc. But times, our situations and ourselves change. (one of my personal traits is changing my mind daily anyway!)
I have never been good with dairies, I was given a five year one in my teens which I never started until I was doing a travel year, and then always had the problem that on the days I wanted to write I was a few days then weeks behind and so never got to write about stuff fresh. (sound familiar?)
So while its has been an eventful year, I’m not going to go into all of it that yet as otherwise this blog will never get to the point. What I want to start with is this week, as nothing in my previous life experience can touch it. I really never thought I would get sucked into the idea of a blog (especially as who could top the Ham's - will add link to his great self later :) ). But things change and I this is as good a modern way as any of adding more info for all my buddies as it is so hard to keep in touch. Any one else feel free to read on too if you like.
I had a strong urge last Wednesday morning to record my current thoughts right there and then as I felt a storm coming, but spurned the idae still thinking it was not my thing. Ok so now I’ve changed my mind, lets start. (Ham: “Urrg get on with it!”)
So lets pick this story up from start last Monday morning.
My back was really sore. It had been now for three weeks, from the 27th November 2008 when I got out of bed and felt like someone had added 20 years to my back, a plumber had thoughtfully tried to restrung me muscles, or maybe in my sleep had nipped out for a game of Rugby - which we must have lost badly.
I am used to being injured in recent years. Often being reminded “Ye nae a young loon now.” My passion is Windsurfing. For the last few years though my life has had to balance between: doing the watersports I love off the icy North East coast of Scotland, in total denial of my advancing years, the rehab needed to repair my ailing bod, and work because yes soon enough every surf bum had to hold down a job. That’s the order I'd like, but unfortunately these days its exactly the reverse!
My most recent previous injury was in October, windsufing at the Broch. (Fraserburgh to you further afield). I had gybed onto a great wee wave near the east end of the beach parking spot. I was pleased and imagined perhaps a few who had stopped would have noticed and be cheering, particularly as the conditions had got marginal. They had seen me from the launch spot, but instead were wondering why I was charging down a wave directly towards the start of the Inverallochy reef. I was only interested in the wave, oblivious to this fact. My fin on the other hand wave was more receptive, greeting a large rock with a “dunk” and stopping the board dead. To the full amusement of the crowd I then followed onto the rock which welcomed me and the top of my pelvis, which then in turn greeted. After a painful hobble to shore and a laugh with the crew there seemed to be no major harm done except a bruised ego and very bruised hip and muscles. So time for another few weeks of recuperation – well done boyo! So the cycle goes on, eh well more time to catch up on work now (see the reason for the re-ordering?)
Anyway soon enough I was back in the water, only a few weeks later. Had another great session with the “Broch Wave Team” on the Saturday, and that week everything was back to usual studying the web weather charts for wind and waves, trying to ignore the impending temps, and like the rest of our crew readying for the next weekend’s storm. Then on Thursday morning I woke to this latest back thing.
My lower back was unstable and the muscles were painful, knotted and occasionally spasming. Hey, I'm used to a bit of back pain, but you kind of know your usual ailments and this felt different to the usual sports induced abuse. Whether my back was saying, “forget it laddie, time to ease up” – or whether the usual rest would do. I’ve been training for a life goal which has so far eluded me – a windsurfing forward loop [link to Dan’s u-tube demo later!]. I've been too stubborn to give up, but incidents like this make me think a full back service might be advised before it shatters on me off the coast! So a visit to the GP and a quieter weekend was planned. Saw the doc on Monday, who reassured it probably wasn’t too bad but shed get me a full Physio assessment.
So yet again the windsurf part of the life-cycle will might have to be delayed.
That brings us up to two Mondays later, this Monday. Still no better, and now with episodes of the back spasms when leaning forward, which were bad enough that I kinda had to fall with it or at least grab something to stop the fall. Just once or twice a day, normally first thing, so no big deal but with Michelle’s persuasion a second visit to the doc was rapidly arranged.
Tues morning, up at the docs for 10am. Luckily the same one saw me and she thought we could chase up start of the physio and also said I should go to the nurse on the way out who’d give me a few blood tests. I have had a few this year already, as they found I had gout ha ha!! So wasn’t bothered by that. Back from work early, and my doc was on the phone saying they had results back and Haematology would like to admit me to ARI immediately to run a few more tests as an inpatient. Apparently I just flunked the platelet count. I was irritated as I thought this was no time to be staying in hospital – as well as work I had my Thesis to finish, and the Christmas shopping to do! I asked if I could just pop in for whatever tests they wanted? No, you have to be admitted tonight was the reply. I nipped to the laptop and googled “low platelets” while I waited further instructions. Whole bunch of stuff but noted Leukaemia not too far down the list. Hmmm great thinking fodder for a hypochondriac!
The doc rang back to say a bed was ready in AMAU, no places yet on Haemo, I wasn’t worried as it wouldn’t be a long stay. I asked about the platelet test and she said it was unreliable and most likely needed retesting. What did I score? 20. Is that bad? Well good is between 1500 and 450 so not really. Trust a theoretical physicist to get is wrong by powers of ten. Also was one of the first times I didn’t bother asking for the units! I looked at where the blood test had been taken on my arm and noticed it had bruised massively, so that maybe something was up. Be ok probably only some weird virus from the North Sea (!)
Michelle drove me up to ARI, and we were on the ward by 6pm. I was checked in and introduced to my fellow 5 boarders. A few characters but that’s another story! Later on a doc came to see me. More blood tests. The she checked for lumps on my skin. None – good. My glands were fine – which was nice, flattering really. Checked for bruises – there’s one, and another, and another! I hadn’t noticed any before and hadn’t windsurfed for 3 weeks. A few looked like where I might have bumped into things (so quite typical I’d say), but others were just little round ones size of a penny which seemed strange. So I guess the platelets must be low as they stop bleeding. She said the experts would be here tomorrow to do more tests and explain more. All in all it was looking all a bit more serious than I had hoped, and a clue was when the poor doc looked a little emotional when I was asking what they thought it was likely to be
That night it was hard not to consider the possibility that something really bad could be up with me. I realised this might be the last night I could be considered healthy, and a dramatically new dawn may be on the horizon. It was fairly scary but I know there were many options so I came to a strange idea that until I knew more I would ride my emotions as if I was watching a film, question is action or weepy?
Wednesday. First blood doc arrived in the morning rounds. More blood tests. They were not sure what was wrong, but they was a problem with the production of my platelets rather than them being used up too fast. So it was time to drill for bone marrow. Those tests off she said they would come back with the results in the
Michelle visited and decided to stay so that we could be there to hear the verdict together. I think I was still fairly upbeat. It was new consultant who arrived and for a while I was reassured as they were not sure of my problem. The penny then dropped as she clarified that was with my back, as yes they were sure I had Leukaemia. I had been half ready as I was sure both previous docs were watery eyed before when I had asked detailed questions. Michelle looked devastated but was incredibly brave and held my hand throughout. I listened now mind racing. How had I got to here in two days? I don’t even know of anyone who has ever had Leukaemia. I tried to concentrate, It was all stuff I am familiar with but not in any detail. The big question
“What’s my chances doc?”. It was hard to measure the reply, actually I forget the actual adjectives which is a shame because I think they were very very carefully measured. “Optimistic of remission” and “a chance of full cure”. I am used to percentages being a clinical researcher, although most who have endured my coffee time rants will know I put little faith in them. Its funny, you want to know your odds, but in when its about your life and the numbers don’t contain at least three zeros then maybe you don’t.
There was a massive sense of urgency implied by the docs. No question of going home for a few days and considering the next move. I did ask. You need treatment to start immediately. It will be intensive chemotherapy. She started gently telling me about symptoms of the therapy - hair loss, but I recon I have had a decade of that already so found that funny. You may become infertile – now that is not funny and verging on unfair as increased virility is gods compensation for natural hair loss and I have yet to take advantage of this fact. Seriously though I panicked as of course we
want children.
Asked about going home even for a few hours but they said no. What about children – you can “make a deposit but only after full virus check – was that OK?” Ive got Leukemia, the big C and they still have to ask if I care if I have a HIV test! Funny really!
It was a great help that Michelle stayed with me and I think now I how hard it would have been to tell her. The next few hours were awful, our future life plans seemed ripped to shreds in literally 24 hours. I had to call mum and Dad, they knew I was in for tests but I am sure like me they thought I’d wing it. It was Dad’s birthday and they were up to town for a meal and theatre. I decided quickly that I would be open with everyone, any other way would encourage my own denial and anyway I am lousy at excuses. It was a really hard call them but I pulled no punches. They missed the theatre after that poor things. not even Mamma Mia was going to cheer them up.
Night time.. Shock. Wake up one day different person, all old perspectives and priorities seem to melt away so fast. Should have knocked the Thesis out years ago, travelled more, the trips to Hawaii and other wave Meccas around the world.
Thursday. All aboard the blood train.
After another eventful night sleep where everyone on the ward is checked for blood pressure every 2 hours and someone at random is chosen to be wheeled in or out. I was told today I was off to the blood ward.
My very own room, how nice!
First thing was more blood tests. some consultations discussing what the treatment would be. Chest x-ray. Later consultation was a frustration as there had been a delay in virus tests. They needed to be clear to use the bank, so they may now be enough time before which could mean that by the time they were cleared in the morning so that I would be eligible to store sperm, there would likely be insufficient time to arrange a “donation” and I would have two choices. Donate and Results in the afternoon were a but
Friday
(apologies - just notes here). Andrology. Race against the nuclear porter. Radionuclide kidney test. Explanation of therapy.
Ok chemo round one here we go! In the blue corner……
That was so bad. Later a few procedures are moved about and few things a little flackey and I go into the first ebb on this rollercoaster.
Saturday
Wake 4 ish for the drip bag change, siphon the python and back to try to get more sleep. Its no good brain is firing now. Am thinking of 1000 things and the stress of it all is hitting me. This is the time I decide to start writing this. I am feeling well emotional now, no harm in that I guess considering. But I call my brother Phil in Oz. He chats to me for an hour (at least). Totally brilliant feel much more charged up now.
Sunday
Catch up with friends on the phone. Some start coming in. “You didn’t need to do this to get us to visit you Martin was my favourite comment!”. Really cool so many people.
Other stuff happened which I may fill in later, but its time to get this blog online.
Monday
Day starts by meeting by new boss. The ward Sister. She’s great and it’s a comfort seeing here rally her charges. Slapped wrist about little use of mobile over the weekend – ooops, ok no more boss!
Physio comes along to help advise on basic exercise. That’s great as has occurred to me I could leave here looking thinner that my 8 stone Gollum impersonation when I came back from Thailand 15 years before. I am keen as think with a physio I could try to be a fit as possible, more flexible, by the time I leave here. I can use a cycle . machine in the passage and do some excersises for now. Gently does it though – as it you push, as you might with in training, any repairing tissue would be at risk from the chemo. Makes sense as the chemo is most toxic to fast dividing cells. Warned also not to expect to make progressive improvement with “training”, just chill plod on easy dude. as the treatment will often knock me back. Snakes and ladders, got it.
Nineish sitting in a wheelchair outside Nuclear medicine. This corridor is a medical physicist super highway. Old colleagues of mine who I have bearly seen since moving up to Woodend pop up. There’s a double take, they got to remember me and then take in the fact that I am impersonating an in patient. So then the explaination. Great to see them and their offered support is a big comfort. Being a physicist I am loving all these tests, have asked for the data to analyse later! Todays is a heart flow test, where a radionuclide is attached to red blood cells so that a gamma camera can see through me but see my blood and make a movie of the blood pumping in and out of my heart. Ecg leads syncronise the frames of the movie so that in no time these is a really cool animation loop of my hearts blood. Cool. Obviously when I did the medical physics course years ago no one would have volunteered for this (ok I might have if asked!!) but now any tiny addition of radiation added to my lot is clearly irrelevant.
Back at the ward and more visits. Andrology say my soldiers are apparently well, nourished, and after parade have bivvied down in straws lollipops to await further orders. Good stuff lads.
Hey I have a room mate now. He is much younger than me, early 20s, and we get on straight away. So that is a big bonus. He seems to be in a similar predicament to me, poor lad. Its definitely easier with age, life’s experience seems to have armed me with sufficient cynicism to wear the edges of my boyish Ideals – which were totally firing on full cylinders at his age. Hey I don’t feel old, but there is definitely a difference now at least for me. Put it this way, before I came in here I was relating most to Jack Dee’s brilliant Lead Balloon. (cheap plug mate you better come and visit – be good to see a cheery face).
Phil rings and we have a wee chat, Poppy and Ruby bless them now know they’re Uncle is a but poorly. According to my youngest niece I am being visited by the spikey doctor (if only she knew how often - sick boy would be jealous of me). At her young age she already has experience of these things.
Afternoon. More bloods, then platelets, and more chemo. Visiting time! Mars comes – brilliant! Then he is turfed out as it is time for the first spinal injection. A bit of fluid will be taken to check for these naughty cells, and a dose of chemo stuffed in for good measure. Good stuff I think, want to protect the old grey matter. Was actually scared of the one – the ideas of needles in my back. But the needle is tiny and no chance of hurting the spine. Interesting operating setup, sit on my bead and lean over my bedside table! He is very skilled and there is very little pain and it is finished well before I guess is should be. Now you lie dead flat for an hour. I can do that!
I’ve now had another good chat today with the specialist support nurse today, he is a rock. This continues to fill in the pieces of my predicament for my overly demanding logical head. It is looking like a we are planning a 6 month campaign of 6 monthly sorties. Shock and awe attack tacktics (the Chemo), regroup, wait for new supplies (wait for my good cells to replenish), and then charge in again. Glad its not the Americans in charge. After the campaign there is a reasonable chance of armistice, (or maybe even total annihilation. We will keep listening for new activity, but if they don’t offer any further attacks on the coming months and then years we could be out of this mess faster than Irak.
I am convinced now that my back pain started due to the increased pressure in my pelvis or sacrum caused by build up of these rouge cells. My back just suddenly seems to just malfunction. It had felt at the time like the muscles were reacting to an injury, although there apparently was not one. Although it started low down, muscles had stiffened one by one up and then back down my back, just like when I injured my back playing rugby as a teenage. The physio said the we have learnt behaviour in back repair, so it maybe was trying to fix the problem the way that worked last time. Because the chemo is expected to knock a sizable amount in the first few injections, I had, with my science head on, sat on Friday predicting that there may be a change during treatment (its not signed off in a note book, but you can trust me!). And sure enough Saturday morning – less than 24 hours after war had started and most the pain have gone. I haven’t had so much as a Paracetomol since Friday!
Tuesday.
Its dark and I’ve just woken up cold again. After usual trip to the tapping station. I unwrap the blanket given to me last night, and curl back up in bed under it.. Theres a pain in the side of my knees this morning and now my chest feels chilled. I did the same last night – had the windows open and then woke cold later on. Am used to a cold draughty fishermans house see. Not all this air con. I chough. Idiot, better not have started a cold. After 4 good days of therapy it is dawning on me what it may be like once my immune is low. I wonder whether what the pain in my knees is? This is going to be a good challenge for a hypochondriac! (just remembered a brilliantly funny book by author Johseph Heller, where Mel Brookes comes to visit him in hospital as he recovers from a very weird nerve disease. Mel is always white as a sheet and has read more medical books and journals than the docs as is totally paranoid he will catch all offer to him!)
Nearly 6 so slept ok. Get confused cos they ask me if I want tea and toast and I nearly left it as breakfast isn’t for 2 hours. Not for you lad. This is your last for a while. Then “nil by mouth”. Ah yes – that must mean the Hickman line is booked for this morning. I wonder which of the fluoroscopy rooms I have been working in for paddys tendon study it will be. I am enjoying these co-incidences.
“It may be a thimble to you but that’s an armful to some”
Wednesday (Christmas eve)
Some days i feel like a soldier. Chemical soldier ready to take whatever orders are needed to win this fit. Most days in fact so far luckily.
Its the middle of the night. Feeling like the typical man with man flu. Few wee aches and now worried what that means. My teeth hurt, and i am thinking "am i about to be punished for years of avoiding the dentist?" I have put off dental treatment for a long long time. They werent so bad but nerver felt A1 either. You see with lower natural defences, all kinds of things could become important so theres me now wide awake thinking about my toothache!!
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Maybe it would have been wise to run this by a few of you more literate buddies before posting, for some tips, like cutting out stuff and making it (more) entertaining. Recent events have made me rethink many things and one is not to worry about what others think, life is just too short!
See you back here later for more, in the mean time and for now just make sure you stay happy, make the most of every day and have fun!
I said I wouldn’t do this. Ever, ever write a Blog. I’ve also recently been readying to leave the other scourges of modern Internet, facebook etc. But times, our situations and ourselves change. (one of my personal traits is changing my mind daily anyway!)
I have never been good with dairies, I was given a five year one in my teens which I never started until I was doing a travel year, and then always had the problem that on the days I wanted to write I was a few days then weeks behind and so never got to write about stuff fresh. (sound familiar?)
So while its has been an eventful year, I’m not going to go into all of it that yet as otherwise this blog will never get to the point. What I want to start with is this week, as nothing in my previous life experience can touch it. I really never thought I would get sucked into the idea of a blog (especially as who could top the Ham's - will add link to his great self later :) ). But things change and I this is as good a modern way as any of adding more info for all my buddies as it is so hard to keep in touch. Any one else feel free to read on too if you like.
I had a strong urge last Wednesday morning to record my current thoughts right there and then as I felt a storm coming, but spurned the idae still thinking it was not my thing. Ok so now I’ve changed my mind, lets start. (Ham: “Urrg get on with it!”)
So lets pick this story up from start last Monday morning.
My back was really sore. It had been now for three weeks, from the 27th November 2008 when I got out of bed and felt like someone had added 20 years to my back, a plumber had thoughtfully tried to restrung me muscles, or maybe in my sleep had nipped out for a game of Rugby - which we must have lost badly.
I am used to being injured in recent years. Often being reminded “Ye nae a young loon now.” My passion is Windsurfing. For the last few years though my life has had to balance between: doing the watersports I love off the icy North East coast of Scotland, in total denial of my advancing years, the rehab needed to repair my ailing bod, and work because yes soon enough every surf bum had to hold down a job. That’s the order I'd like, but unfortunately these days its exactly the reverse!
My most recent previous injury was in October, windsufing at the Broch. (Fraserburgh to you further afield). I had gybed onto a great wee wave near the east end of the beach parking spot. I was pleased and imagined perhaps a few who had stopped would have noticed and be cheering, particularly as the conditions had got marginal. They had seen me from the launch spot, but instead were wondering why I was charging down a wave directly towards the start of the Inverallochy reef. I was only interested in the wave, oblivious to this fact. My fin on the other hand wave was more receptive, greeting a large rock with a “dunk” and stopping the board dead. To the full amusement of the crowd I then followed onto the rock which welcomed me and the top of my pelvis, which then in turn greeted. After a painful hobble to shore and a laugh with the crew there seemed to be no major harm done except a bruised ego and very bruised hip and muscles. So time for another few weeks of recuperation – well done boyo! So the cycle goes on, eh well more time to catch up on work now (see the reason for the re-ordering?)
Anyway soon enough I was back in the water, only a few weeks later. Had another great session with the “Broch Wave Team” on the Saturday, and that week everything was back to usual studying the web weather charts for wind and waves, trying to ignore the impending temps, and like the rest of our crew readying for the next weekend’s storm. Then on Thursday morning I woke to this latest back thing.
My lower back was unstable and the muscles were painful, knotted and occasionally spasming. Hey, I'm used to a bit of back pain, but you kind of know your usual ailments and this felt different to the usual sports induced abuse. Whether my back was saying, “forget it laddie, time to ease up” – or whether the usual rest would do. I’ve been training for a life goal which has so far eluded me – a windsurfing forward loop [link to Dan’s u-tube demo later!]. I've been too stubborn to give up, but incidents like this make me think a full back service might be advised before it shatters on me off the coast! So a visit to the GP and a quieter weekend was planned. Saw the doc on Monday, who reassured it probably wasn’t too bad but shed get me a full Physio assessment.
So yet again the windsurf part of the life-cycle will might have to be delayed.
That brings us up to two Mondays later, this Monday. Still no better, and now with episodes of the back spasms when leaning forward, which were bad enough that I kinda had to fall with it or at least grab something to stop the fall. Just once or twice a day, normally first thing, so no big deal but with Michelle’s persuasion a second visit to the doc was rapidly arranged.
Tues morning, up at the docs for 10am. Luckily the same one saw me and she thought we could chase up start of the physio and also said I should go to the nurse on the way out who’d give me a few blood tests. I have had a few this year already, as they found I had gout ha ha!! So wasn’t bothered by that. Back from work early, and my doc was on the phone saying they had results back and Haematology would like to admit me to ARI immediately to run a few more tests as an inpatient. Apparently I just flunked the platelet count. I was irritated as I thought this was no time to be staying in hospital – as well as work I had my Thesis to finish, and the Christmas shopping to do! I asked if I could just pop in for whatever tests they wanted? No, you have to be admitted tonight was the reply. I nipped to the laptop and googled “low platelets” while I waited further instructions. Whole bunch of stuff but noted Leukaemia not too far down the list. Hmmm great thinking fodder for a hypochondriac!
The doc rang back to say a bed was ready in AMAU, no places yet on Haemo, I wasn’t worried as it wouldn’t be a long stay. I asked about the platelet test and she said it was unreliable and most likely needed retesting. What did I score? 20. Is that bad? Well good is between 1500 and 450 so not really. Trust a theoretical physicist to get is wrong by powers of ten. Also was one of the first times I didn’t bother asking for the units! I looked at where the blood test had been taken on my arm and noticed it had bruised massively, so that maybe something was up. Be ok probably only some weird virus from the North Sea (!)
Michelle drove me up to ARI, and we were on the ward by 6pm. I was checked in and introduced to my fellow 5 boarders. A few characters but that’s another story! Later on a doc came to see me. More blood tests. The she checked for lumps on my skin. None – good. My glands were fine – which was nice, flattering really. Checked for bruises – there’s one, and another, and another! I hadn’t noticed any before and hadn’t windsurfed for 3 weeks. A few looked like where I might have bumped into things (so quite typical I’d say), but others were just little round ones size of a penny which seemed strange. So I guess the platelets must be low as they stop bleeding. She said the experts would be here tomorrow to do more tests and explain more. All in all it was looking all a bit more serious than I had hoped, and a clue was when the poor doc looked a little emotional when I was asking what they thought it was likely to be
That night it was hard not to consider the possibility that something really bad could be up with me. I realised this might be the last night I could be considered healthy, and a dramatically new dawn may be on the horizon. It was fairly scary but I know there were many options so I came to a strange idea that until I knew more I would ride my emotions as if I was watching a film, question is action or weepy?
Wednesday. First blood doc arrived in the morning rounds. More blood tests. They were not sure what was wrong, but they was a problem with the production of my platelets rather than them being used up too fast. So it was time to drill for bone marrow. Those tests off she said they would come back with the results in the
Michelle visited and decided to stay so that we could be there to hear the verdict together. I think I was still fairly upbeat. It was new consultant who arrived and for a while I was reassured as they were not sure of my problem. The penny then dropped as she clarified that was with my back, as yes they were sure I had Leukaemia. I had been half ready as I was sure both previous docs were watery eyed before when I had asked detailed questions. Michelle looked devastated but was incredibly brave and held my hand throughout. I listened now mind racing. How had I got to here in two days? I don’t even know of anyone who has ever had Leukaemia. I tried to concentrate, It was all stuff I am familiar with but not in any detail. The big question
“What’s my chances doc?”. It was hard to measure the reply, actually I forget the actual adjectives which is a shame because I think they were very very carefully measured. “Optimistic of remission” and “a chance of full cure”. I am used to percentages being a clinical researcher, although most who have endured my coffee time rants will know I put little faith in them. Its funny, you want to know your odds, but in when its about your life and the numbers don’t contain at least three zeros then maybe you don’t.
There was a massive sense of urgency implied by the docs. No question of going home for a few days and considering the next move. I did ask. You need treatment to start immediately. It will be intensive chemotherapy. She started gently telling me about symptoms of the therapy - hair loss, but I recon I have had a decade of that already so found that funny. You may become infertile – now that is not funny and verging on unfair as increased virility is gods compensation for natural hair loss and I have yet to take advantage of this fact. Seriously though I panicked as of course we
want children.
Asked about going home even for a few hours but they said no. What about children – you can “make a deposit but only after full virus check – was that OK?” Ive got Leukemia, the big C and they still have to ask if I care if I have a HIV test! Funny really!
It was a great help that Michelle stayed with me and I think now I how hard it would have been to tell her. The next few hours were awful, our future life plans seemed ripped to shreds in literally 24 hours. I had to call mum and Dad, they knew I was in for tests but I am sure like me they thought I’d wing it. It was Dad’s birthday and they were up to town for a meal and theatre. I decided quickly that I would be open with everyone, any other way would encourage my own denial and anyway I am lousy at excuses. It was a really hard call them but I pulled no punches. They missed the theatre after that poor things. not even Mamma Mia was going to cheer them up.
Night time.. Shock. Wake up one day different person, all old perspectives and priorities seem to melt away so fast. Should have knocked the Thesis out years ago, travelled more, the trips to Hawaii and other wave Meccas around the world.
Thursday. All aboard the blood train.
After another eventful night sleep where everyone on the ward is checked for blood pressure every 2 hours and someone at random is chosen to be wheeled in or out. I was told today I was off to the blood ward.
My very own room, how nice!
First thing was more blood tests. some consultations discussing what the treatment would be. Chest x-ray. Later consultation was a frustration as there had been a delay in virus tests. They needed to be clear to use the bank, so they may now be enough time before which could mean that by the time they were cleared in the morning so that I would be eligible to store sperm, there would likely be insufficient time to arrange a “donation” and I would have two choices. Donate and Results in the afternoon were a but
Friday
(apologies - just notes here). Andrology. Race against the nuclear porter. Radionuclide kidney test. Explanation of therapy.
Ok chemo round one here we go! In the blue corner……
That was so bad. Later a few procedures are moved about and few things a little flackey and I go into the first ebb on this rollercoaster.
Saturday
Wake 4 ish for the drip bag change, siphon the python and back to try to get more sleep. Its no good brain is firing now. Am thinking of 1000 things and the stress of it all is hitting me. This is the time I decide to start writing this. I am feeling well emotional now, no harm in that I guess considering. But I call my brother Phil in Oz. He chats to me for an hour (at least). Totally brilliant feel much more charged up now.
Sunday
Catch up with friends on the phone. Some start coming in. “You didn’t need to do this to get us to visit you Martin was my favourite comment!”. Really cool so many people.
Other stuff happened which I may fill in later, but its time to get this blog online.
Monday
Day starts by meeting by new boss. The ward Sister. She’s great and it’s a comfort seeing here rally her charges. Slapped wrist about little use of mobile over the weekend – ooops, ok no more boss!
Physio comes along to help advise on basic exercise. That’s great as has occurred to me I could leave here looking thinner that my 8 stone Gollum impersonation when I came back from Thailand 15 years before. I am keen as think with a physio I could try to be a fit as possible, more flexible, by the time I leave here. I can use a cycle . machine in the passage and do some excersises for now. Gently does it though – as it you push, as you might with in training, any repairing tissue would be at risk from the chemo. Makes sense as the chemo is most toxic to fast dividing cells. Warned also not to expect to make progressive improvement with “training”, just chill plod on easy dude. as the treatment will often knock me back. Snakes and ladders, got it.
Nineish sitting in a wheelchair outside Nuclear medicine. This corridor is a medical physicist super highway. Old colleagues of mine who I have bearly seen since moving up to Woodend pop up. There’s a double take, they got to remember me and then take in the fact that I am impersonating an in patient. So then the explaination. Great to see them and their offered support is a big comfort. Being a physicist I am loving all these tests, have asked for the data to analyse later! Todays is a heart flow test, where a radionuclide is attached to red blood cells so that a gamma camera can see through me but see my blood and make a movie of the blood pumping in and out of my heart. Ecg leads syncronise the frames of the movie so that in no time these is a really cool animation loop of my hearts blood. Cool. Obviously when I did the medical physics course years ago no one would have volunteered for this (ok I might have if asked!!) but now any tiny addition of radiation added to my lot is clearly irrelevant.
Back at the ward and more visits. Andrology say my soldiers are apparently well, nourished, and after parade have bivvied down in straws lollipops to await further orders. Good stuff lads.
Hey I have a room mate now. He is much younger than me, early 20s, and we get on straight away. So that is a big bonus. He seems to be in a similar predicament to me, poor lad. Its definitely easier with age, life’s experience seems to have armed me with sufficient cynicism to wear the edges of my boyish Ideals – which were totally firing on full cylinders at his age. Hey I don’t feel old, but there is definitely a difference now at least for me. Put it this way, before I came in here I was relating most to Jack Dee’s brilliant Lead Balloon. (cheap plug mate you better come and visit – be good to see a cheery face).
Phil rings and we have a wee chat, Poppy and Ruby bless them now know they’re Uncle is a but poorly. According to my youngest niece I am being visited by the spikey doctor (if only she knew how often - sick boy would be jealous of me). At her young age she already has experience of these things.
Afternoon. More bloods, then platelets, and more chemo. Visiting time! Mars comes – brilliant! Then he is turfed out as it is time for the first spinal injection. A bit of fluid will be taken to check for these naughty cells, and a dose of chemo stuffed in for good measure. Good stuff I think, want to protect the old grey matter. Was actually scared of the one – the ideas of needles in my back. But the needle is tiny and no chance of hurting the spine. Interesting operating setup, sit on my bead and lean over my bedside table! He is very skilled and there is very little pain and it is finished well before I guess is should be. Now you lie dead flat for an hour. I can do that!
I’ve now had another good chat today with the specialist support nurse today, he is a rock. This continues to fill in the pieces of my predicament for my overly demanding logical head. It is looking like a we are planning a 6 month campaign of 6 monthly sorties. Shock and awe attack tacktics (the Chemo), regroup, wait for new supplies (wait for my good cells to replenish), and then charge in again. Glad its not the Americans in charge. After the campaign there is a reasonable chance of armistice, (or maybe even total annihilation. We will keep listening for new activity, but if they don’t offer any further attacks on the coming months and then years we could be out of this mess faster than Irak.
I am convinced now that my back pain started due to the increased pressure in my pelvis or sacrum caused by build up of these rouge cells. My back just suddenly seems to just malfunction. It had felt at the time like the muscles were reacting to an injury, although there apparently was not one. Although it started low down, muscles had stiffened one by one up and then back down my back, just like when I injured my back playing rugby as a teenage. The physio said the we have learnt behaviour in back repair, so it maybe was trying to fix the problem the way that worked last time. Because the chemo is expected to knock a sizable amount in the first few injections, I had, with my science head on, sat on Friday predicting that there may be a change during treatment (its not signed off in a note book, but you can trust me!). And sure enough Saturday morning – less than 24 hours after war had started and most the pain have gone. I haven’t had so much as a Paracetomol since Friday!
Tuesday.
Its dark and I’ve just woken up cold again. After usual trip to the tapping station. I unwrap the blanket given to me last night, and curl back up in bed under it.. Theres a pain in the side of my knees this morning and now my chest feels chilled. I did the same last night – had the windows open and then woke cold later on. Am used to a cold draughty fishermans house see. Not all this air con. I chough. Idiot, better not have started a cold. After 4 good days of therapy it is dawning on me what it may be like once my immune is low. I wonder whether what the pain in my knees is? This is going to be a good challenge for a hypochondriac! (just remembered a brilliantly funny book by author Johseph Heller, where Mel Brookes comes to visit him in hospital as he recovers from a very weird nerve disease. Mel is always white as a sheet and has read more medical books and journals than the docs as is totally paranoid he will catch all offer to him!)
Nearly 6 so slept ok. Get confused cos they ask me if I want tea and toast and I nearly left it as breakfast isn’t for 2 hours. Not for you lad. This is your last for a while. Then “nil by mouth”. Ah yes – that must mean the Hickman line is booked for this morning. I wonder which of the fluoroscopy rooms I have been working in for paddys tendon study it will be. I am enjoying these co-incidences.
“It may be a thimble to you but that’s an armful to some”
Wednesday (Christmas eve)
Some days i feel like a soldier. Chemical soldier ready to take whatever orders are needed to win this fit. Most days in fact so far luckily.
Its the middle of the night. Feeling like the typical man with man flu. Few wee aches and now worried what that means. My teeth hurt, and i am thinking "am i about to be punished for years of avoiding the dentist?" I have put off dental treatment for a long long time. They werent so bad but nerver felt A1 either. You see with lower natural defences, all kinds of things could become important so theres me now wide awake thinking about my toothache!!
------------------------------------ ------------------------------
Maybe it would have been wise to run this by a few of you more literate buddies before posting, for some tips, like cutting out stuff and making it (more) entertaining. Recent events have made me rethink many things and one is not to worry about what others think, life is just too short!
See you back here later for more, in the mean time and for now just make sure you stay happy, make the most of every day and have fun!
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