Photos from the Everest Challenge

Back in action! Enjoying the fantastic Easter snow at the top of Cairngorm after the Everest Challenge

Thank you so much to everyone who have donated - we have raised an incredible £1960 so far for Friends of Anchor, which is absolutely brilliant and will directly help Leukemia and other Cancer sufferers. The donation page is still very much open, so both myself and Friends of Anchor would be very grateful for any belated donations!
Please click to Donate now on Friends of Anchor site

Summary of the challenge (Geeky stuff!)
Total ascent: 10,020 meters
Distance travelled: about 98 Km!
Total runs: 98 (Grouse 22, Eagle 76)
Total Time: 7 hours 51 minutes (includes 45 mins of rest)
Calories burnt: 4300
Average heart rate: 132 bpm
Time for legs to stop aching: about 7 days and even more baths!!


The Eagle run at the lecht which I used for most of the day. With so few people I was lucky not to have to queue more than half a dozen times in the day. My standard run was in 3:45 mins round trip: 2:50 going up and 55 seconds down! (i had a lot of time to time myself!)

I spent most of the day going up the hill on the poma....

...nearly there


Made it! Reached the Everest height after 7 hours!

Celebration, and some relief, at reaching my target!

Stopped at top for a "photo shoot" after reaching the target. I was feeling pretty good and still enjoying the snow so decided to aim for 10,000m by the end of the day!


nearly there!

After being shooed off the slopes so they could close up, my final total was 10,020 meters. It had been a brilliant day, great fun and although my feet never stopped aching I was very surprised that I still had energy and was still smiling at the end of the day....

....the real pain set in started about 24 hours later!

The final tally on the polar monitor

Click to go to previous post "Everest reached!"

Summit Reached - and then overshot to 10K vertical!

Update: a fantastic response so far on the Friends of Anchor site - thank you all so much from me and the ANCHOR unit.
OK so below is the hard proof this is my heart rate and altitude record for the whole 8 hours. The first two gaps are genuine breaks for food at the car (with the second my heart rate goes up at the end as the Grouse was down and I ran down to get back to the Eagle!) The last gap, at summit height, was due to the Eagle Poma tow also breaking for a while - I guess I wore it out! I probably only queued for less than 6 of the 98 runs, it was a very quiet day despite the clear weather. I kept my feet in the secure in the board's bindings up the Pomas to save time. I am pretty satisfied with the rate I managed, and I think this may be quite a hard total to beat unless the Pomas are sped up!

With the Cairngorms closing due to high winds at the beginning of the week, and foul weather due for the rest of the week, on Monday night I spied a weather window for the Lecht for Tuesday.
After some hasty planning I was there at 8am and waiting for opening.

The weather looked good, only high broken cloud, but still a hard frost. In fact there was a thick sheet of ice for 20 yards across the road just before the centre which almost took my car out before the challenge started!

I am very grateful to the staff of the Lecht. They were brilliant, very supportive although a little doubtful I would manage the challenge, since stormy weather was predicted for later. This may prevent the faster lower runs (Harrier and Buzzard) from opening , which was where I was hoping to put in most of the descent! They donated a lift pass, for which I will add an additional personal donation to FOA. The Poma station crews were great and kept my spirits high on the Grouse and Eagle. The lifts were scheduled to close by 4:25 so I had to get a move on!

I got started on the Grouse at 8:40. The slopes were hard and icy at this time so I took it a bit carefully at first: I didn't want to be an Everest casualty! I managed around 4-5 minutes per lift cycle of 110meters, so that looked like the challenge was a possible, although in a daunting 7-8 hours!
After the first 1000m I switched to the Eagle. This run is 100m in vertical height and again I managed around 4 minutes per run cycle. I took a couple of wipeouts on the hard sections in the morning and my shoulder is still screaming this morning, but the legs still worked so I carried on!

Around 11 am the snow started softening. The Eagle run was now perfect. The snow was a bit slower, but for me I could go now faster and was managing 60 seconds down the run, so 3:45 for the whole cycle.
By noon I was halfway there, 4400 meters of descent, so the challenge was definitely feasible as long as I could keep the pace up.
I had a couple of quick breaks during in the day, at 3000 and 6000 meters, for refueling and to give my aching feet a break.

It was great when I could see the end was possible, and I reached it (8850m) around 3pm, just as the lift broke down for 20 minutes.
Somehow my energy levels had stayed up all day, in fact I was really enjoying it so saw no reason now to stop. In the end I was the last one off the slopes at 4:30 after pushing the final total ascent/descent to 10,020 meters! I guess I have been really determined to do a physical challenge for the ANCHOR unit ever since my days on the ward pacing up and down the stairs.

Thank you all SO much for your support, it means a huge amount to me and to Friends of Anchor. And for anyone willing there's still plenty of time to add your donation if you wish on their site.

Thanks again

Martin (today feeling very sore but very content!)


click to go to "Photos from Everest Challenge"

click to go to Previous page "Everest chellenge for Leukaemia"

Snowboard Descent of Everest ! a Leukaemia fund raising challenge

UPDATE: Waiting on good weather. Expected attempt: Tuesday 23th March, Lecht Ski Centre.

please now go to my page on the Friends of ANCHOR site for online donations
note so far they have not updated the running total, but I believe there has already been a great response so thank you all so far. Please Donate, even if just a little, as this challenge and Charity is incredibly important to me.
Many thanks, Martin


Welcome back to my blog everyone, and sorry about the shocking picture!
I feel very fortunate to be able say since my Chemotherapy, bar a few hiccups, I am doing very well, touch wood. I've been back at work since November and my health is continually improving.

It is now one year post chemotherapy, so to mark this I am organising a charity sports event:

"The Descent of Everest by Snowboard!"

OK, I couldn't get the backing to go to Nepal, so instead my task will be carried out in the Scottish Mountains, very soon, at the end of March.

The aim is to climb and descend by snowboard the equivalent height of Everest in one day That's 29,035 feet or 8850 meters!

HOW?
It will take place in the Scottish mountains, at either Cairngorm or the Lecht ski slope. I will be using Ski lifts Pomas and T-bars for going up, (no cheating using the Funicular or Chair Lifts!), and will then be descending purely by snowboard power! It's going to be a tough challenge which will mean going almost non stop for around 8 hours!

I will be wearing Polar heart rate/altitude monitor which records total ascent and descent over time. So I will publish the proof on this site when all is completed!

The serious aim is to achieve this in one day, which is definitely a tough challenge. However, if I fail, I'll will go back the next day to complete the descent!

WHEN:
It will be carried out in just over a weeks time, between 22nd and 26th of March. (The date is not fixed as I aim to find a good day when the Pomas are running full speed).


The Charity - Friends of Anchor
Since my diagnosis for Burkitt's Leukaemia in December 2008, I vowed to myself that if I was well enough I would start raising money for Leukaemia. As I wrote a year ago in this Blog, I was particularly moved by the support of the charity "Friends of Anchor". It supports the Aberdeen and North Centre for Haematology, Oncology and Radiotherapy (ANCHOR). All money raised goes to good use as the Balmoral Group run the administration for free. I found their support help raise my spirits at times when I needed all the help I could get. In addition they also fund cancer research projects.

SPONSORSHIP / Donations
Online sponsorship is preferred as you can then reclaim gift aid automatically.
please go to my page on the Friends of ANCHOR site

at the bottom you will find a donation payment section

Please ensure you leave the text "Martin Downing" in top line of message box
so we can keep a running total going!

Well thats all for now. Thank you very much for your support

Martin :)

plaease sponsor me for Movember!

Hi all! I've been thinking about fund raising ever since this journey started. Some of my friends and family have already done so, but so far not me.

Hair growing has been a fun passtime for the last few months since it relented and decided to come back. Considering that in April I had no hair on me head, eyelashes, brows and stubble let alone a Mo - the fact that I can grow a weedy Mo is a pure celebration!! Unfortunately I had just shaved the latest months growth off when my brothers invite to doneate to Mo-vember came though - informing me of this event - dooh!!!
So although theres only a few days to go - I thought I would join Movember!
So have a laugh and please give a wee donation to this great cause.

click on the title above, or go to: http://uk.movember.com/mospace/507611
thanks,
Martin

revenge of Retoximab

I waited all afternoon for the call from my consultant. I dont remember being so nervous for a peice of news since this saga started on 17th Dec. By 6:30 I had assumed the clinic would have finished and that they had not managed to complete my tests in the lab, in the back of my mind hand I was worried they were double checking a bad finding.

At last the mobile rang, it was my doc, and I'll always thank him for this, he started: "Martin, its excelent news!". No leukemic blast cells were seen in the marrow, and there were "text book" signs of retoximab interfering with the blast maturing pathway, which is believed to be the cause of retoximab induced neutropenia. So while I am still neutropenic for now, it is most likely not caused by a relapse.

I am so relieved you would not believe. There is a very high incidence of relapse for Burkits Leukemia and you would expect it expecially within a few months of remission. So the last week has been close to unbearable and I have definitely become closer to my nemesis again. I am now on GCF injections again (prescribed by doc but self administered, I still had some left!). The neutropenia should pass in time so I just need to be careful or I will be back on the ward again with an infection (no take-aways, bah!).

The chances of Retoximab-Neutropenia is about 1 in 30, so combined with having one of the rarest leukemia's (c. 1 in 1,000,000) I am as always proving to be as awkward as ever!

More Tests

Blood test today at 9:30. Then waited until 11:30 chatting to fellow patients until I was called for the consultation. It showed my neutraphils have dropped again from last week, from 0.7 to 0.3. So I am now officially back at neutrapenic. This is scarey stuff as it may imply relapse, although on the good side is that all my other blood results are good, and that one of my chemo drugs, Retoximab (aka rat-flu), may have caused the neutrapenia as this has been seen with some other patients. My consultant offered me a bone marrow biopsy immediately, or to come back later. I opted to go ahead, so thats now done already. We are hoping the biopsy shows nothing bad in the marrow. In the meantime I now need to keep away from infection or I'll be back in the ward anyway! Please please be the Retoximab, I'll let you know when I do.

Time for an update

Erm, ok, sorry. So its been a while. I had wondered whether I was going to continue this blog. I was not sure what to write anymore, the thing is that mostly things now happen at a slower pace to the time in hospital. Daily updates just didn't seem relevent anymore. But it has been almost 2 months since I last wrote anything, and on reflection it does seem like a fair bit has happened or changed since and I did not mean to leave it that long. Thanks those who have sent me messages of encouragement, and those who requested blog updates, i think you must be crazier than me but here we go anyway. So I'll try to catch up later but for now jump to the present.

Physically I am improving really well on the outside. The hickman line came out in April with no hitches, and all my hair has been growing back. I have not been allowed back in the water, even the swimming pool yet, this is mostly because of infection risk since my immune system is still very much compromised. So my rehab excercise plan has changed from being swimming based to walking, jogging and a bit on an old rowing machine.

I read Lance Armstrong's book in hospital I noted that he found the followup period far harder than his time in hospital. I remember thinking that sounded about right. Emotionally this period has been very challenging. It is very hard if not impossible not to get paranoid each time I get an unexpected headache, or just start feeling more tired in the mornings than the week before.

I am now having monthly visits and blood tests at the hospital. Unfortunately the last test, which was last tuesday, has thrown me a curve ball as it was not quite bang on. My neutraphils have dropped since the last test 4 weeks before to 0.7, this is below normal and borderline neutrapenic. This could be caused by infection, but more worrying by onset of a relapse. This was followed up by a microscope screening the next day which did not show any bad cells. Thats good but I am not out of the woods yet. Now I just have to wait for a retest, which is due today.

So not a good week, its been paranoia central! despite that I am still positive and hoping for good news today.

I'll follow this up soon - promise :)

Remission!

Just a quick message to say I have just been given the results of the (painful!) bone marrow test yesterday -

my cells are in Remission!

This is great news, it means a normal number of blast cells were seen in the test slides with no abnormal ones. It doesn't guarantee a cure, I have to wait and find that out over time by implication, but everything is going to plan, hurray!

More good news is that I now get the Hickman line removed from my chest on Monday. So when that heals I can get back in the water :))

Recovery time at home

Wooops, I seem to have left it a while since I updated this blog.

For the last 2 weeks I have been at home, with only a weekly visit to the hospital for blood tests. It has been great. As I have said many times before in this dairy the simple freedom of home is amazing compared to hospital living!
The first week I was still very anaemic and coughing my guts out - the after effects of the para-influenza virus! At the moment the main problem is having very little energy, (and coughing like a sea lion). I feel like I have been fitted with old batteries that just give up without warning after a few minutes - I guess this is the chemo and the anaemia. I am recovering little by little each day but it does mean I have been sleeping heaps and going to the beach very little, something I find a bit frustrating: I want to do stuff! But I get it, I have to take it easy so my bod can recover :)

The coolest thing was that I came out of hospital just in time to go to my friends 20th wedding party, great to see so many people but ok i didn't manage any Ceilidh dances (was dizzy just standing up!)

While I haven't done much, I have repaired the surf wagon again. This time it was the power steering which seized causing an impressive cloud of smoke as the belt burnt though and Michelle yelling "get out the car its on fire!", very funny in retrospect! I have now replaced the pump and belt in a very laid back way over the last 10 days. Hope it works!
Also, don't know why, I have made some Marmalade! Well the oranges were in the freezer so it seemed the thing to do! That took me days as well.

Well today I go back in to the ward for blood tests, and possibly for the full bone marrow test. I am praying this will show remission, lets keep fingers and toes crossed and hope it does!

I'll update this when I know more :)

The Great Escape!

Thursday.
Over the last few days i have been contemplating many ideas of escape from my cell block. Option one, get hold of enough bed sheets for a rope, but left tool kit at home so not sure how I'd get through the window lock (still could ask Michelle to bring it back in). Second idea, leave disguised as a visitor, they are so used to seeing me in my stripped or tartan jammies that a good suit and hat might do the trick, and I could just walk of the ward. Third option, and you have to have this one, dig a tunnel. I like this one especially as I can hear diggers next to this block of the hospital, so maybe they could be bribed to assist, and if not their noise would be my cover. I have started collecting spoons and bags. Of course there is a fourth option, get release papers. I plan this one by becoming so healthy the doctors give in to my demands and let me out!

Before I had had a chance to work out the weakest bit of the floor to start the tunnel that is what happened. My counts were up to 2.5 on Wednesday, and my temperature has stayed down overnight. By the way last night I had Michelle bring me in a thermometer, lidl of course but digital, so I could ease my fever paranoia. Every time I got stressed and feared I was becoming Pyrexic, i.e. high temp, I checked it was still low and so relaxed again.

So this morning with the Docs it was all change to the treatment regime, "as long as today's counts show no nasties, then your off the antibiotics, and out of the door, no need to come back until next week!"

Oohh kaay, cancel the tunnel, return the spoons to the canteen, and lets wait for the blood result. Which came back late afternoon showing the army had been busy: platelets 85, neutraphils 4 point something, and the rest was "fine". Aff ya go laddie!

Brilliant so that's what happened, and I am on pass for now pending blood tests and further bone marrow tests, until next Thursday, touch wood assuming I stay healthy, I am not going to be at the hospital. A WHOLE WEEK OF FREEDOM!

So I left the hospital late afternoon. Back home I still feeling pretty shaken by the experience - I really don't recommend being locked in a room for a week, especially if you are immuno-deficient and then fed viruses. I was definitely still in battle mode for the rest of the night, but Grrrrrrreat to be home, ahhhh.

THANK YOU!
BIG thank you to everyone who has been visiting and sending messages of support this last week, and of course all previous weeks. I hope you'll forgive me if you haven't had a personal response. I had been checking emails, facebook, and the blog comments but then switching back into a lifeless bed bug/slug! Your support has been a great support and very often lift me at just the right time when stuff is getting me down, so thanks and thanks again! :)

I also found some messages on Patient Line yesterday too, (hi simon, James, cuznic and Jack!). Sorry I should have told you all - I've stopped using the evil PatientWhine phone system. Totally dude.

I am now at home. If your up for a chat, please now call/txt me on my mobile, skype, home number, or email me if you need any of those.

One maer time so were affa fine....
Dinne call me PATIENT LINE!

prisoner cell block 6

Things are looking up today! Had no temperature since yesterday morning, and my white neutraphil cells were up yesterday to 0.5 (not enough, but a great start to recovery), and whatever this chest infection has been it seems to be moving on. So all that remains is to persuade the docs to get me outta here as soon as possible before I catch the next admission's ripe disease. I'd also like to be off the antibiotics too because there is a lot of c-diff about in both the hospital and the ward, and the broad spectrum antibiotics make you very susceptible to it.

Meanwhile, myself and my two room mates, are still prisoners to the infection control team's "protocol", which incidentally we have not seen or had any patient information sheet on - (I will be seeking answers about this!). We are STILL not allowed outside our room except once a day for a bath. Our room seems to have become our prison cell!

Anyway the good news is I am feeling pretty healthy again, and itching to return to Fittie.
After seemingly days of lying flat on my back semi-sleeping, sweating, or lying still trying to avoid another coughing fit, I now feel like I have some energy again. That normally means bad news for the ward staff, but they cunningly have me hemmed in, so I can't run amuck causing trouble today! I guess I will do a load more reading!

cooking with gas - scorchio!

This title refers to me, not the hospital food. I am managing to sleep in fit ful bursts, but temp feels so high overnight I just didnt want to move. So I had to force myself every so often to sit up and drink. This morning (6am) it is 39.6c, the docs are now changing my antibiotic therapy to the "second line option".
only possible good news is that there was a glimmer of activity from the neutraphils yesterday 0.1, so maybe they will now start recovery - i'll know more later.
in the meantime I need to concentrate on breathing stready so I dont chough my lungs out.
bahhhh not how I hoped to finish my therapy!

11am update: Well being lying still sweating away half asleep, for about 4 hours, and my temp has dropped to 37.7! The cough feels different too. So maybe have turned the corner - and maybe todays bloods will show I have some wee friends back again. Fingers crossed!

spiked again

Its 7:40 and very peaceful for a hospital right now. curtains are drawn but looks like a perfect day outside- I made a partition across my side so I could have some fresh air. (the others like a closed atmosphere).

I have been trying to sleep with my arms and knees as high in the air as I can. This is not something kinky but because the joints in my wrists and knees have become very inflamed and painful over the last 2 days. It is probably a side effect. No anti-inflamatory allowed on this treatment - only paracetomol. But they are still well painful - maybe I should raise them higher!

So I said peaceful, but that is between the interludes of coughing fits. We are all coughing like crazy when awake. Yesterday the docs were quite happy with our (i.e. the boys and myself in our locked down room) various flu like coughs and ailments, and thought we would all recover quickly. However, later on both myself and another patient had fever "spikes". In here if you go above 38C and are neutrapenic - there is an immediate action plan: blood tests and first line antibiotics.
My fever came on while Michelle was here (7:30) and hit 38.6c - so I tried to get the doc to factor that in! ha ha! By 9pm I'd had the blood tests,the drip stands were back, and was recieving 2 old friends back to my blood stream - gentamycin and tazocin. Fast work :)
But this is disappointing, as yet again I am now on a complex drug course which if my neutraphils do come back soon may stop me getting home for a while longer, lets see.

My throat is much more sore today, so its lucky I've been stuffing my face while it wasnt! I'll resort back to liquids for a day or two til it eases.

sensible isolation or lab rat?

Well I seem to be doing OK at the moment. But this IVAC treatment IS stronger than I gave credit for in the earlier cycle. Maybe i didnt notice it so much spliced between two methotraxate doses. So I am getting plent of rest.
Had a couple of bags of red blood yesterday which has brought me back to a respectable 96, and platelets are hanging on in the 20s, so may be able to last out without more transfusions.

However, I am now located back in the "room of four", and yesterday there was an odd turn up. An influenza outbbreak viral lock down was instigated on this room and two others following processing of a viral swab from a different patient, quite a few days before. What this means to me is that I am stuck in this room 24-7 with others who are all starting to cough away, and getting worse by the sounds of it. So I am trying to work out why I am HERE instead of breathing pure Fittie air. I feel like I have been recalled in while I am neutrapenic to take part in some madcap MOD experiment - how can this be the best solution for ME?
(ok, well I have a very patient doc and he's now convinced me its better to stay put. So I will!)

So this is me hanging in there, perhaps with a cold, for a few days more until the white cell come back. I hope they are back and put in a better appearance than we may expect from the other Whites on Sunday!

recovery time

wednesday. Very tired at the moment, this chemo is actually very powerful, just not as flash with its side effects than the other rounds. Hard to get enough rest even at night, but I am managing all the same.
Well I have had a good break at home, but my bloods are now right down so I am being recalled to the ward until I recover. No problem, but cant wait now until i am out again!
Martin

Sea legs or Chemo legs?

Tuesday: [current status - at home on pass until weds!]

A long while ago I traveled with a van from Cadiz to the Canary Islands. The first stage was quite a rough 2.5 day crossing through the Atlantic. We eventually stopped at the harbour in Tenneriffe for a few hours, great dry land! But when I stepped out into the harbour and the lower city - the land was moving! I had "sea legs". I was so used to moving on the boat that my body compensated now on land. I never forgot than, and the tapas for breakfast were very good too!

From 8 am yesterday I was finally detached from my IV machine buddy, this time we had been inseperable for 24hours x 7days. In another sense I was being detached ceremoniously from my planned treatment as there was only the spinal therapy to go in the afternoon. Thats a massinve thing - brilliant and daunting. Its funny, I always struggle when detached from the drips: I jump out of bed and stop, half way across the room, waiting for the bungee pull back!

Well everything necessary went to plan yesterday, the final spinal tap, and it was agreed I could go on pass at home until a review on Wednesday. At home we had an awesome meal last night, I think my mum could rocket into business with a full range of soon to be very famous fish pies if she wished!

Again though by night, my body crashed and just will not settle. Now that I am at home, with more comfort, and less fluids needing to be passed, I thought it would be easier. I guess I need to reaclimatise. I think I still have chemo legs! I was constantly waking expecting there to be something else, it felt invisible and abstract, knowledge, time, position in bed? Was it the lack of an IV? or just the knowledge of the end of my planned chemo plan? The very concept of just lying and then sleeping peacefully without "some prop" did not seem to work. I was constantly searching the bed for this abstract missing link! (i am sure Buttons would have helped - but he was off doing his own thing!). So I am likening it to sea legs - Chemo legs , and for sure like that in a day or two it will pass and I'll will be sleeping easy!

Doie Doie (Al Fraz and Stu)!
and good morning to the rest of you!

Martin

Diluted Dreams

So what happens when your peeing 10 litres a day, you take sleeping pills and bed down for the night? No, no, new sheets were not needed! Somehow I have a routine of sleeping or resting between each "hourly pitstop".

Last night I actually was sleeping, and the dreams i remember got pretty surreal even for me. The first dream knew about things: objecty peices or maybe even tasks or procedures that needed to be done hourly ish. The dream was convinced a Cabinette was needed to fit each peice together better, (maybe buying me pee time?), so I was set to scour the land to find one to fix the "peices".
Waking was a double relief to from this as it made no sense and I was time for a very full pot!

A second was equally abstract, but fading as fast as I try to record it. It was about surfing, windsurf boards and rigs were being frenetically adjusted to get myself and others out on the water, but that moment was not going to happen - it wanted me to wake and pee first!

I've been cheating and stacking bottles in the room rather than using the toilet - call it "on suite", but it helps when your clearing 7 pots after midnight!

Already I want to get up an prepare for the day (and breakfast!). The pump says "450" left - thats 2 2/3 hours to bag end (7:45) my timing has been on pump syncro over every night, it also means about 40 mins to next pee stop. Brain off now please, shut up! sleep!

Still only 6:30am: Pace yourself, pace yourself, rest, sleeep! No good, I've already counted the timer down to the blood test time (from 5 to 6 am). My nurse was bang on, but I was already planned to give them 30 min more (80ml) before I would have been in the doctor room having a script made out. We/I need standard bloods early today so that I can get out today if the whites are behaving! No accidental delays this Monday.

Last few nights have been getting some chest pain both eve and in early morning (4-6am), with tacky heart type rythyms. Am sure it'll settle again. I should be time to get some stairs in and maybe settle it before breakfast! A final 3 up 3 down with the IV stair cheildh!

So hoping for bacon and eggs, a spinal injection, doc consultation, easy home drug order and free pass today. wish me luck!

end of the juice maybe nigh?

Nae too bad a night, and today was ok too. That's the last bag gone down, just IV fluid til morning and a spinal chemo tomorrow. My brain is working overtime and a long discussion about the next stage is needed with my long suffering consultant next week. Need to convince myself whether extra treatment would or would not help. What a weird space to be in, wanting to volunteer for extra juice, but that's how i feel right now!
Hoping to a home pass tomorrow night before white cells vanish. That would be good.
Was well fed up today to play with plastic weights and actually find them heavy due to the muscle loss from the last session fiasco, so yes i am a bit down but only as i know it just means so much more work in rehab that I just didn't seem necessary. But but but there's good and bad around each corner, and i know i can put that right, just maybe no forward loops in July after all.
Cooked breakfast ordered for the morning - that always proves an amusement for the ward staff and me, so will see what the kitchen delivers!

Houdoe! Tot Ziens!

Martin

Buckets of chemo, bacon and eggs!

Tuesday. Great to wake up at home again. Had enough time to make a hearty breakfast before heading back to the hospital.
Today there were no problems, treatment started with the rat poison - (Rubitoximab!).
It feels brilliant to be on the last treatment, all pain from previous treatments fades away, to material fit only for a few anecdotes over a brew, that is when I am ready to sit in a pub!
After the chemo I was briefly disconnectd from the "IV tubes", so Michelle and I were able to go to the canteen. We both had chips and tea - a very cheap date! Came back just in time to catch Dave, cheers buddy for coming in!

Wednesday. Now in the middle of final (hopefully) round 4 chemo, today and tomorow is 14 hours of chemo, starts 11 am finishes at 3 am. Then 3 days of 2-3 hours, then an injection to spine on day 6 (not normally as bad as it sounds) and thats it, then just wait for white cell drop and then recovery. Could have a fair bit of time recovering at home if i am very lucky.

It really feels like buckets of chemo are being poured down me, amounts to about 10 grams a day! Does feel tough, very tiring and a strange set of sensations, but reduces tomorrow.
So althugh this session is heavy at the moment, its not as bad as Methotrexate!

Thursday. Woke up in the night with a coughing fit. That got me panicing as my good friend sharing my room is here precisely because he has a chest infection! Nurses calmed it down with good ol cough medicine and docs are nae too concerned, so neither am I.

Friday. Chemo seems to have switched my guts back into turmoil. Lots of visitors today, great fun, but by mid evening the same as last week, totalyl knackered!

Saturday. Still sleeping poorly, more resting than sleeping. I got up early and managed a little stair climbing: bungee style 4 up 4 down! Great surprise today, the kitchen delivered me a cooked breakfast - bacon, sausages and "egg" (dont ask what!). Very tasty! Was a massive palava, but the dietician has recomended extra food so who am i to turn down cooked breakfasts! I'll definitey try ordering that again. Am also ordering sandwiches and milk as extras so maybe I'll be looking Cartman like quite soon!
Pretty mellow day so far. Hoping for a good night.
Catch you all later!

Ding Ding! Round Four!.....

Monday
I wake up early and am ready for action, today is the start of round four and I am itching to get back in the ring. Bring it on!
I have a cuppa on the beach as Miche readies for work, then once she leaves I head to the car. That job is gonna get done! I am under the car before 8 am and ripping panels back out, oops maybe too quick as one comes out in two pieces, Reaches for the silver tape...
Tape split the spring bounces back into action (not quite as impressively as i hoped but fully all the same). Panels patched and re-fixed the job is truly completed. Yeah!
Bath and breakfast of coffee, 2 eggs, 2.5 toast, ham and a tin of beans later, oh and a bit of packing, and I am ready for the hospital by 10 am!
The roots drop me off and I am welcomed back to familiar and a very pleasant surprise: I am back in the room of two, the second room I was in from the start, this is fantastic and will make this round even better!

I quickly run through my list of tasks I know are needed to be done this morning by all the staff: Rubitoximab, blood tissue type test and heart stress test. All appears well as they know all this! I settle in and get to know my new room mate. I also do my standard paranoid full cleaning of my bedside cabinet, bad, patient line machine and adjacent walls (although I wore gloves this time). Checking in forms and the tissue typing blood test follows, and later a brief doctor visit.
After lunch I am summoned for the stress test.

In the Cardio department a few things happen I was not expecting: first off more chest hair bites the dust as I am shaved to make way for the electrodes. OK, but then the skin is sanded hard with sand paper for each electrode, which are salted! Is this torture really necessary? Because I am certainly stressed now! They don't like my "Crocs", but I insist I can run in them and that they will not fall off. Still I now wish I had come in with trainers!

On the Machine it starts at a nice uphill walk, OK this is easy, no worries here. I notice the picture on the wall in front of me and ask which Harbour it is, apparently I have to guess but the clue is it on the local north coast. I try but it ain't no surf beach so I fail that test, (it turns out to be Portknockie).

The pace steps up every 3 min or so. After a few steps I ask "can I run now?", the answer is no, so I have to force my wee legs to walk faster. For someone who could not eat for over a week and lost a stone a week ago I guess I am doing OK, but I imagine Lance Armstrong looking on in disapproval as the test winds up a pace. We reach my heart maximum of 180, so I guess the test will complete. No still faster to go, so I start to hang on a bit harder one armed while the other is used to test my blood pressure. I don't want to give up and be "beaten" by the machine. Apparently there is only one level left and its up to me if I go for it, but am told I can run for this one. I am cream crackered but dammit, as its up to me, I have to go for it! I think I lasted only 20 seconds and finally shout "stop!". Beaten, I step off thinking if only I was tested 3 weeks ago when I did the 46 storey stair climb. They reassure me all the info they needed was collected, but I still wanted to beat the machine! I have since found out I had a haemoglobin (Hb) blood count of only 80, a level at which many patients are transfused at, so maybe I can cut myself a bit of slack!

It was interesting for me noting my blood pressure result during the excercise, where my systolic rose from 139 to 180 odd, and the diastolic fell from 86 to 74 .

Back on the ward I am seen by one of my docs, who takes a standard Blood test, he's a Surfer like me so we have a good crack. After a fine afternoon of visiting, and the evening meal (less fine), I am twitchy about when the chemo will start. I then find out it has been cancelled for the day as the blood test results were not back in time. I am very disappointed, so I ask if I can go for a walk off the ward. I am surprised how angry I am inside, I had really wanted to be back on the fight. I pop to the staff canteen to case it out, I have not tried it since all this started and haven't eaten there for years. I try a plate of chips as the rest does look dire tonight! Halfway through I formulate a plan, which is that in compensation surely there is no need for me to stay the night, since I have received no new treatments. I check back with the docs and they agree, and meanwhile Miche arrives so we grab my ruck sac and head for home!
I have a great evening at home, despite the fact I am stuffed with hospital food so there's no room for anything more wholesome, but never mind! (The Moral - there's always a good side if you open your eyes to it!)

Rugby and the Art of Motor Mechanics

Friday, Saturday and Sunday

On Friday I am feeling much better, so much so I decided to fix the surf mobile!
After many a google for "ignition switch" and "golf mk3" I hit a fix-it web page. Good times. So a plan was set for the weekend. Rugby was watched Friday night with Dad and friends and I tried to have a beer but ended up having to dilute it! Yes and only the one beer was eeeked through the entire game - great game though it was.

Saturday. Feeling even more charged up, (mainly I believe thanks to my breakfast regime of 3 poached eggs on toast for the last few days!), so set off to VW with Miche and bought a wee critter, a small elec box caller a started switch, for which the challenge was now to jam in behind the key slot, wahey no probs eh?!...
Later that day I finally stopped chatting to all my neighbours and got round to it. With the guide printed and carefully followed, the steering column yanked out as expected, and soon enough the wee piece fitted jammed into place behind the starter key. Now what next: "Reassembly is the opposite of assembly" was the only guide note......Hm, not so helpful. Physics teaches me this is rarely the case! A short while later a problem was identified: there is a compression spring between the steering column and universal which has to mate up spline perfect. This is an exacting and fiddly job, but which needs the strength of Arnie to compress the spring while a feeble mortal lines it up! Was this left out of the guide on purpose, leaving VWs around the world without steering columns?! Hmmmph.. its totally impossible to reassemble, so I give up and go to my day clinic at the hospital and then get back in time to watch the England vs Ireland Rugby game. All is not lost though, (although it soon was for England), as the engine now starts and there's loads more room on the drives side than before, I just have no steering anymore!! My good buddy cooks up a huge pot of chili which we consume completely by the end of the match. I retire shortly after as my batteries were suddenly failing. This leaves me in a weird state, which I have now experienced a few times, where I can not control my body temp: when cold try a bath but then too hot, then cool off and become too cold again! This cycle continues, (not the baths though!). I have learnt it means I am worn out and need sleep. Anyway the evenings chili eating has temporarily pushed my weight back up to 10 stone 1.6 which is well cool, plus 3 or 4 pounds in one sitting ha ha ha, cheers my good buddy!

Sunday. I decide to take it easier today as last night hurt, or was at least was unpleasant, just due to tiredness. Later on though I have a revelation on how to solve the car compression spring: take it out, compress it in a clamp, and then hold it compressed by wrapping Sellotape - sorry stick backed plastic - around it. After a few attempts, with my dad watching on suspiciously, the tape holds. I whack it back in place and a few skin scrapes and cussing later the steering column is reassembled. Perhaps I was too laid back about the day as its dark now,so am holding a torch to put reassemble the body panels. (I had to visit the hospital halfway through the task, they either didn't notice or maybe were too polite to point out the grease on my trousers and hands!) Once complete I turn the key, wahey the ex-jamie surf wagon is propelled into action once more, so I take it for a spin!!

During supper Dad helpfully asks me how the tape split after I had reassembled the column. The plan was to cut it with a knife at this point, but eeerrr oops forgot! So OK there is one job still to do! Again after a body building stuffing session, today of baked ham, (thanks Mum and Miche!), I am shattered and need bed. I try resting and watching a film, but fall asleep 20 mins in! I now, as before, have to dig deep to complete the evening drugs list and do tasks like flushing IV Hickman lines. With these done I head to bed and wait for sleep in between the hot cold flushes.

Freedom!

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!

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"

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.

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

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

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

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.

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 :)

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

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

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.

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

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

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 the 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'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.

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!

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.