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
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