Stirred but not Shaken

Posted by raetsel at Saturday, May 31, 2008

After a bag of fluids to fully hydrate me I started my next chemo drug
at 12:00 660mg cyclophosphamide in 500 ml saline over 3 hours along
with 800mg Mesna in 500mg over 12 hours this is to protect my bladder
from the cyclophosphamide.

This regime is repeated every 12 hours for three days so that means I
had to have a fresh bag of cyclophosphamide fitted at about 02:30 this
morning along with more mesna. So that means alarms bleeping and
general disturbance in the early hours.

The guy in the bed opposite is on a similar regime but different
timings which means from about 01:45 to 03:30 I didn't get much sleep
so I listened to BBC radio 7 until I dropped off. I slept through to
obs at 06:00

I'm not too tired at the moment but suspect a nap will be on the cards
between visitors today. My brother is coming in the afternoon and Andy
this evening so mom and dad get a day off.


Happy Birthday MCL

Posted by raetsel at Friday, May 30, 2008

Yesterday evening I started my Rituximab through my drip ( no further
upgrades to Ivy ). I was able to have this at a faster rate than
before because I didn't have any adverse reactions. By 20:30 that was
all done so I could be disconnected from Ivy for the night.

I also had my dexamthasone steroid but instead of 20 x 2mg tablets to
swallow it was given as an injection into my line. A much easier way
to have it, whilst I am in hospital anyway.

It was exactly one year ago today that I got my diagnosis of Mantle
Cell Lymphoma. I'd had the biopsy on 21st May and went to the
Birmingham Treatment Centre at City Hospital to see the ENT consultant
who had done the biopsy, or rather one of her team.

I'd always known that an underlying lyphoma could be the cause but it
had been played down (probably because of my age).

The registrar I saw checked my biopsy scar asked a few questions about
how I was and then opened my notes and said something along the lines
of "I'm afraid it's not good news. The results show you have lymphoma,
we're going to refer you to a haematologist"

As you can imagine I was a little taken aback but I didn't really feel
that emotional as it were. Maybe it was the direct way the information
was delivered. I asked if the was any details as to the stage the
disease was but all the registrar could tell me was that it was in the
Mantle Cells.

I was told I should get a haematology appointment with in 2 weeks and
I was given a form to have some blood tests.

I guess I was in there for about 15 minutes maximum. If I was feeling
uncharitable I could say it was a bit like "This is ENT, we don't do
cancer. Our work here is done." In fairness the registrar asked if I
had any more questions but I could tell most would have to be answered
by haematology.

There was a nurse with him who pointed to the long queue for blood
tests and said I could try in the morning if I didn't fancy the wait.

Contrast that experience ( at the same hospital ) with my Dad's colon
cancer diagnosis where we saw the surgeon and a Macmillan nurse. We
were given leaflets and a number to call of his key worker for anymore
questions. A much better way to handle it over all I think even though
I coped ok.

I decided to come back the next day for bloods because otherwise I
would have to ring Mom and Dad to explain the delay.

Looking back I think a little bit of shock kicked in at this point or
maybe it was because I was busy thinking about lots of other things
but I remember it took me about half and hour to get out the car park
as I walked to the car then remembered I needed to pay for my ticket,
I found the machine walked there then walked back to the car but still
hadn't actually validated the ticket so had to walk back.

Anyway I got it sorted and headed over to Mom and Dad's to tell them
the news. That was the hardest part in those first few days telling my
nearest and dearest and watching ( or listening over the phone) as
they dealt with it.

Enough reminiscing for now. Breakfast has arrived on the ward!


PICC 'n' Mix (PG)

Posted by raetsel at Thursday, May 29, 2008

Well. It has been an eventful 24 hours. The doc saw me yesterday
afternoon and said I should get a hickman line in tomorrow ( I.e
today 29th ) but just in case they would fit a PICC line to avoid
delaying chemo.

Different doc this time who tried and failed on the right side where
the last line went but appeared to succeed on the left side. However
when the xray came back the line had taken a wrong turn and was headin
back the way it came in another vein. They were going to adjust it but
it wouldn't flush so they took it out after confirming the hickman
line would be done today.

Later that evening another doc came to fit a canula so I could have
sedation when they fit the hickman line. It took him four different
tries at different sites before the canula was in. Don't know what is
up with my veins they never used to be this bad.

Anyway after a restful night by 09:00 this morning I was in the xray
theatre being prepared for the hickman line. Unfortunately the canula
did not work so they could not put sedation on there. The surgeon
decided he could give me some once the first part of the line was in
the vein in my neck. Seems a little late you might thinlk but at least
it was before the worst bit of pushing pulling and poking.

They did that and the sedative did the same as last time keep me awake
and with it but not really caring. Then there was a delay as they
didn't have the right sort of attachment for it with two lumens so I
can have two drugs at same time.

Still alls well that ends well and after 4 hours enforced bed rest I
am up and about with my hickman line fitted. My neck is a bit sore and
movement restricted by the dressing but it's not too bad.

I'm now about to start my first chemo drug of this session my
Rituximab mono-clonal antibody.


Rinse and Repeat

Posted by raetsel at Wednesday, May 28, 2008

I 'phoned the ward at 09:15 this morning expecting to be told to at
least call back after 12:00 when the docs had done their rounds, but
the bed was all ready for me and I was asked to get here for about

I am now back in room 6 but bed 8 this time. Only one bed in this room
I haven't been in. Wonder if I get nectar points when I complete the

There are a couple of familiar faces on the ward so we have been
catching up with where we are with treatments etc.

This round of chemo is a repeat of the first one I had at the end of
March so hopefully I know what to expect.

The first job will be to get a line in of some sort. Though I am now a
priority for a hickman line they are talking about a PICC line again
to start at least.


Well enough to go back into Hospital

Posted by raetsel at Tuesday, May 27, 2008

Not as paradoxical as it sounds.

I saw my consultant today and she confirmed that my blood counts are all back up to normal or near normal levels. In fact my white cell count has had a "bounce" and over shot the normal levels.

As I don't have any infection or temperature the high level is just caused by over production from the GCSF injections. ( This brings to mind images of groups of teenage granulocytes congregating on artery corners , bored and looking for trouble).

As my counts are ok I am now ready for my next round of chemo ( which is a repeat of the first round, the HyperCVAD bit). So I have to ring the ward tomorrow to see if there is a bed free.

This is a bit quicker than I was expecting but that's fine. The sooner I start the sooner I finish and there has been a bit of a delay between rounds two and three. ( Well technically rounds 1B and 2A ).

The consultant had quite a detailed conversation with me about the treatment protocol for my donor stem cell transplant after my final round of chemo. It's all rather technical and will be the subject of a separate post once I've worked out the best way to explain it.

Approaching Normality

Posted by raetsel at Monday, May 26, 2008

The bone pains have basically all gone but for the odd twinge in my one hip now and again and I feel much more like my normal self.

I managed to do the ironing yesterday and didn't feel exhausted by the process.

I'm off to see my consultant at the clinic tomorrow where hopefully it will show my counts are also well on their way to normality and we can look at scheduling the next round of chemo for some time next week. When I get back from that I'll log back on to work and start going through all those lovely emails.

That was the Week that was

Posted by raetsel at Saturday, May 24, 2008

When I went to the day unit yesterday I explained about the bone pain and the doctor looked at my counts and decided I could stop taking the injections ( I had 2 days left) as my counts were coming up ok and will cope on their own. I'd taken one that morning so still had the nasty evening bout of bone pain that seemed to be the routine but hopefully from now on I'll start to feel it less and less.

It has been quite a tough week. Probably the hardest for me to deal with since I started treatment back in March. It's been a combination of things again, headaches, tiredness, infection and worst of all the bone pain from the injections.

Still I've coped so far and this morning I am feeling a little more like my old self. To follow on from the words of the title song for TW3 "That was the week that was, it's over let it go."

The Drugs Don't Work

Posted by raetsel at Thursday, May 22, 2008

Just like the Verve said.

Unfortunately after my post yesterday the bone pain didn't really abate much despite the paracetamol and it was not a pleasant few hours yesterday evening. However by 22:00 the pain had subsided a bit and I could take a couple more paracetamol. This kept me going until I woke about 05:40 feeling the pain again. More pills and I was able to have a decent lie in.

A fresh injection in the morning but during the day it's been ok just a dull ache mostly kept at bay by the pills. It must be something about when my stem cells are most active or when the effects of the injections kick in but after about 16:00 the pain comes back with a vengence and paracetamol don't seem to touch it.

When I go to the day unit in the morning I'll ask for something stronger. They did offer me some codeine last time I had some bone pain but at the time paracetamol was doing the job. This time I'll take them up on their offer.

A Quiet Day

Posted by raetsel at Wednesday, May 21, 2008

I gave myself my first GCSF injection this morning and then went to the clinic to have my bloods taken. Back there on Friday.

I've spent the rest of the day day taking it very easy just sitting and reading or lying on my bed and reading. A very relaxing day, only slightly marred by the pulsating bone pain in my lower back and hips that came on at about 16:00 showing the injections are working already.

I've taken a couple of paracetamol and hopefully this will calm things down. They have been pretty effective in the past.

Topping and Tailing

Posted by raetsel at Tuesday, May 20, 2008

When I woke up this morning I felt a slight tenderness in my neck and brushing my teeth on one side was just a little tender too. I was due to see the doctor's at the full clinic today so I had the ideal opportunity to mention it.

The clinic was really busy when I got there, literally standing room only. They saw over 60 patients today. I developed a nasty headache whilst there but I got my temperature checked and it was fine. A couple of paracetamol eased the headache whilst I waited an hour and 20 mins past my appointment time.

I saw the main registrar who treated me when I had my last cycle of Chemo. He felt my neck and looked in my mouth and said he couldn't see anything obvious and to just monitor my temperature closely.

He checked my blood counts. My haemoglobin had come back up from 9.1 to 11.5 which was better; though still below the range of 13-17 it was not low enough to warrant another transfusion as my symptoms had eased. My neutrophils were recovering slowly up from 0.0 to 0.2

Given all this he decided my blood system needed a little helping hand to recover and prescribed a course of GCSF injections for me, one a day for five days. These are the same as I had when I had my stem cell harvest back in November. Then it was 3 injections a day to actually over stimulate the Granulocyte Colonies so the stem cells could be harvested.

This time it is just to give them a hand in producing more white cells for me. I administer the injections myself. Once you've done the first one and got over the idea of sticking a needle in your flesh it's fine and virtually painless. The pain comes in the the hips, thighs and sternum as they sulk about all these extra cells. Mind you I might not get so much of that this time because I am taking a smaller dose ( 480mg instead of 1080mg).

I will continue to have my bloods monitored 3 times a week and I'm booked back in to the main clinic for next Tuesday when hopefully things will have started to recover. This has effectively put another week's delay on me starting my next round of chemo, so it's now w/c 2nd June at the earliest.

The doctor also suggested I rest up as much as possible for a few days to give my body the best chance of coping with everything that is going on. So I won't be logging on to work until probably next Tuesday after the bank holiday and I'll try and keep away from the computer in general so expect only brief status reports on here for a while.

A Delicate Matter (12A)

Posted by raetsel at Monday, May 19, 2008

12A - Contains 1 or 2 adult references to the nether regions.


With any blog of a personal nature there is always the question of how much to include. If the blog is only read by anonymous readers, people you don't know, then it's less of a concern but when it comes something you know is read by family, friends and colleagues then it can become an issue. With a blog about a medical condition that's even more likely to raises these sorts of issues.

However I want to try and be as honest as I can in this blog to show what it is really like to deal with this treatment and to try and show it warts an all ( almost literally as it happens but I'll get to that in a moment).

For those few people who stumble on this blog who are having to deal with something similar or know someone who is I think being open is important. As for the rest of you, stop sniggering at the back there.


Yesterday as well as feeling under the weather I noticed a quite firm and slightly sore swelling on my perineum (no I'm not providing a link for that, look it up yourself if you don't know where it is :oP).

I figured this was possibly just a heat rash type thing and when I got up this morning it was not as swollen as it was yesterday. However I decided to mention it to the nurse at the day clinic today when I had my bloods taken and get it checked out just in case it was a pre-cursor to anything more serious.

They took me into a side room for the doctor to examine me. Yes it was slightly embarrassing but they are all professionals and there was almost no sniggering. No of course there was no sniggering. They said I was right to mention it than have something develop. The doctor thinks it might be a minor infection and although it has already gone down slightly he prescribed some antibiotics for me.

These are a new type, for me, called Metronidazole that deal with anaerobic bacteria that can infect this area.

The moral of the story is I'd rather be embarrassed than seriously ill.

At least I am only on Metronidazole tablets, the instructions for the suppositories are, quite literally, rather chilling:-


  1. Wash your hands.
  2. If the suppository is too soft, it may be chilled in the refrigerator or under cold running water before unwrapping.

Kind of, sort of, not very..........

Posted by raetsel at Sunday, May 18, 2008

I've been feeling rather under the weather today. Hard to describe really, apart from a headache I just feel generally a bit yuk and rather tired.

My temperature has been teasing me too, it's been up and down all day only briefly touching 37.7 which would be cause for concern or at least a call to the ward if it stayed at that but then it drops to a perfectly fine 37.2

I'm taking it very easy today, lots of naps and general vegetating listening to the radio.

I'm taking my temperature every hour or so just to be on the safe side.

Drip, drip, drip........ (PG)

Posted by raetsel at Saturday, May 17, 2008

PG rating only if you can't stand the site of blood even if it is in a bag.

By the time the blood was all sorted I started my transfusion at about 16:00. After having my cannula fitted on the day unit I was taken up to a bed on the Bone Marrow Transplant Unit.

This is where I will be for a large part of my time when I have am stem cell transplant in a couple of months time. Each room is like a little hotel room with an en-suite toilet and shower, fridge, small TV and Hi-Fi and big HEPA air filtration unit. This is where I'll be spending a couple of weeks in semi-isolation whilst my new stem cells settle in. So it was nice to see what the setup is like.

Blood transfusions have to be done relatively slowly usually over two to three hours so the first bag wasn't finished until 19:00. Part way through the second bag when the nurses did my obs my temperature was up to 37.9. This can happen with a transfusion so they had to slow down the rate for the second bag and my temperature came back down.

As a result it didn't all finish until nearly 23:00 so when Dad collected me I spent the night at Mom and Dad's as I was quite tired.

This morning I feel much better and have a bit more energy , I'm not quite 100% (say 77%) but better than I was yesterday morning. I'm back at the clinic on Monday for blood tests and seeing my consultant on Tuesday.

Here's what a bag of blood looks like ( just in case you wondered ). I'm O Rh+ so common as muck :o)

My counts are still on the way down or only just bottoming out so as well as being anaemic I am neutropenic and slightly thrombocytopenic i.e. have a lower than usual platelet count. Platelets are involved in making blood clot.

My platelets aren't low enough to require a transfusion for them yet ( they are collected and given separately to the red cells that I had yesterday ).

I probably won't be ready for my next round of chemo ( a repeat of the first ) until after the Whitsun bank holiday as my counts need to increase and then maintain a good level before I can have treatment.

Give blood, make love and don't think twice

Posted by raetsel at Friday, May 16, 2008

The words are the first line of the song Bread and Roses from a favourite band of mine, Mr Hudson and the Library and particularly apposite for today.

I was feeling a little off yesterday afternoon after returning from my walk and more out of breath than I would have expected. This morning the walk from the car park to the day unit also tired me out more than it should have. I suspected my haemoglobin levels might be a bit low and mentioned this and the slight breathlessness to the nurse.

She checked with the doctor and I am a bit anaemic according to my blood results from Wednesay, with a reading 9.1 when the normal range is 13.5 to 17.5 g/dl for a man. ( That's grammes per decilitre or per hundred millilitres ) It's possible it's dropped lower since Wednesday.

Therefore I'm going to have a blood transfusion of a couple of units this afternoon once they have cross matched my type and got a bed sorted out for me.

I'll be able to go home after the transfusion and the beneficial effects should be pretty immediate.

This is the first of what will probably be many transfusions over the course of my treatment. Especially when I have the stem cell transplant.

I have given blood in the past so in one sense I'm just getting my own blood back, but even so I'd like to make a little appeal to you, dear readers.

Please consider giving blood, as they say on the telly it is an amazing thing to do. To find out if you are eligible you can answer a few simple questions here.

I know you folks are busy but some of you have said in the past "if there is ever anything I can do for you, let me know". Well here is something you can do for me. So go on find out where you can give blood, you know you want to. You get free tea and biscuits.

Thanks very much.

Pills All Popped

Posted by raetsel at Thursday, May 15, 2008

Last night I finished my Fluloxacilin antibiotics that I was taken after having my PICC line removed.

That means I am now only taking one Allopurinol anti-gout tablet in the morning and using the anti-bac mouthwash four times a day. Quite a reduction from when I was on steroids, anti-fungal and stomach tablets as well.

Working a full day and I have also been able to take a turn round the duckpond today ( well a turn and a half in fact ). Not as warm today but pleasant enough.

Watching me, watching you.........

Posted by raetsel at Wednesday, May 14, 2008

Anyone remember Game for a Laugh

I went to the day unit for bloods as usual this morning then logged on to work in the afternoon.

Whilst at the day unit I bumped into my fellow inmate from my last sojourn who was moved into isolation when he got bug. He's been out since Monday and was looking well. It was nice to catch up with him and doubtless our paths will cross over the coming months.

So the Game for a Laugh reference, well since the end of April I have been using the Google Analytics service to provide stats for this blog and see how people are logging on etc.

It shows that I have had 219 hits from 75 unique visitors. I'm not sure how the 75 unique visitors translates to actual humans as it is possible that if you disconnect and reconnect to your Internet Service Provider you get a different IP address and could appear as a different visitor. ( Though if google use http cookies they might be able to spot this).

In comparison my other technical blog gets about 300 visits a week ( though currently over 750 a week as I have some info on there about a new Linux distro that people are interested in).

However for this blog it's the quality of the visitor I get not the quantity and I love you all :o)

I can also see that 74% of people are running Windows, 18% Mac and 7% Linux

More interesting is that the type of web browser being used is 45% Internet Explorer and 47% Firefox. If you haven't tried firefox , please do consider trying it. It's a much slicker and flexible alternative to IE and it is "open source".

It's a Walk in the Park

Posted by raetsel at Tuesday, May 13, 2008

It was a lovely day again today and so at lunch time I decided to get a bit of exercise and walk down to the local park and have a turn round the duck pond.

It was great to get out in the fresh air and increase my activity levels after being so sedentary for so long. I've put quite a lot of weight on since I started treatment and though I can blame part of this on the steroids and other aspects of the treatment I have to take some responsibility myself.

So I'm trying to eat a bit healthier and get a bit more active.

Here are a couple of pics from the park. The M6 runs about 30 yards away from where I was walking but I imagine the "gentle roar" of the traffic is the sea breeze.

There were some new additions at the duck pond as well.

I've had a pretty productive day at work. My first full day for a couple of weeks and I haven't felt too bad. Supposedly gentle exercise can help with the fatigue symptoms of chemotherapy.

Back to work

Posted by raetsel at Monday, May 12, 2008

I went to the day unit to have my bloods taken this morning and everything is ticking along fine. Back there on Wednesday for the same again.

I'm about to log back on to work and catch up with all the emails etc. though first I have to get someone thre to reset my account as the password has expired and I can't reset it remotely.

This will be the pattern for the next week and a bit I would imagine. Working from home when I'm not at the day unit. Next Tuesday I see my consultant again and by then my counts will probably have recovered or be recovering and we can plan the next round of chemo which is a repeat of the very first one.

Travelling Light

Posted by raetsel at Sunday, May 11, 2008

Having been in hospital three times for overnight stays ( albeit for one I was released the same day ), I have built up a list of stuff that I take with me. Usually I manage to forget a couple of things and ask Dad to pop to the flat and bring them in on the evening.

However now I have made a list of what I need and I thought it might be interesting to share it with you ( as well as making a handy place on the Internet to check the list should I ever need it).

It's not exactly travelling light but it does fit into one day pack and one shoulder bag.

So here we are in no particular order:

  • Pyjama Trousers
  • Dressing Gown
  • Toiletries (Deodorant, toothpaste, toothbrush)
  • Current Medications
  • Andrex Moist Toilet Tissue ( to counteract NHS 100grit sandpaper )
  • Wet Wipes
  • Crystalized Ginger ( to help with nausea, Ha!)
  • Mobile Phone
  • Mobile Phone Charger
  • Bedside Clock
  • Herbal Teabags (Green Tea, peppermint etc)
  • Current Book
  • Small Note Book
  • A4 Journal
  • 3 x Pants
  • 3 x Shirts
  • Slippers
  • Fleece
  • Ipod Shuffle
  • Portable Digital Radio
  • Cash (£10)
  • EEE Ultra-portable Laptop (Ernie)
  • EEE Charger
  • 160GB Portable Hard Drive
  • Towel
  • TV Card for Bedside Terminal
  • Spare Batteries
  • Handheld Battery Operated Fan

Oh What a Beautiful Morning

Posted by raetsel at Saturday, May 10, 2008

I had a really good night's sleep in my own bed last night and by about 09:00 this morning I was sitting on my balconette ( not a balcony, the estate agent's particulars were specific on this ) drinking freshly brewed black coffee, eating a warmed pain au chocolat and reading the last few chapters of The Northern Lights by Philip Pullman.

It was a very nice way to start the day and I've continued in a similar relaxing vein.

Back in the groove

Posted by raetsel at Friday, May 09, 2008

I'm currently sitting outside the day unit waiting to have my bloods
taken. This will be the routine for the next week or two. Blood tests
to check my count every Monday, Wednesday and Friday.

I had an ok day yesterday, my energy levels are returning to normal
and I've been able to drive myself to the day unit today. I wouldn't
say I was at 100% but on the way.

My left arm is still quite cracked and sore but improving slowly. My
right arm is much better. The swelling and redness has gone down.
There's still a bit of a hard lump along the vein but it's not as bad
as it was.

The plan is to spend the weekend at the flat and see how I go.
Hopefully that'll be fine and I'll be logging back on to work after
clinic on Monday


Sorry Little Soldier

Posted by raetsel at Wednesday, May 07, 2008

Well I didn't have quite as good a night as I'd hoped. I struggled to get off to sleep a bit, probably because I had napped a bit too much during the day ( not that I had a lot of choice in the matter when my eyelids just closed of their own accord). Then I was up three times for a wee in the early hours as the last of the fluids worked their way out of my system.

My left arm has had a reaction to the plaster they put on it after the aborted PICC line attempt and is rather sore, particularly within the crook of the elbow which means the skin keeps cracking with the movement of my arm.

Overnight I had a problem in my right arm where the PICC line is and the area above it was hard, painful and a bit swollen.

Add to this still feeling fatigued and a bit constipated/bloated and I was feeling very sorry for myself first thing. It was the fact it was multiple things to deal with I think that made it worse.

However divide and conquer is the maxim. Some paracetamol helped with the pain in both arms and a high fibre muesli and bran flake breakfast sorted out digestion.

I was due to go to the day unit today to have my bloods taken so they would be able to look at the PICC line, which I was pretty sure they would end up taking out.

Normally I go to the day unit for bloods on my own but I got my Dad to take me this time as I was still feeling fatigued.

The doctor took one look at my arm and the PICC line and said it would have to go ( the line that is, not the arm). It might just be a small clot caused by not having anything through the line for a day or it could be the start of an infection. ( Though my temperature was fine ).

They used the line to flush some Teicoplanin antibiotics into me before taking it out. They then took some bloods from my left arm the old fashioned way by stabbing me. As well as doing my blood counts they will also do cultures to see if I have grown another bug. ( Hopefully not this time ). I'm now on another seven days of Flucloxacillin antibiotic tablets as a precaution.

Having dealt with all these things I'm not feeling so bad now. My energy levels are still low and I'm still taking paracetamol for the pain but things are easing and I can cope with them.

Just a brief note about my rating system. I'll still give you a heads up when there are any gory details coming with PG etc but aside from that you can take it as read that posts will be "U" rated.

Back at .Mom and Dad's

Posted by raetsel at Tuesday, May 06, 2008

Just a quick update. Had an ok night and shifted all my fluids so I've
come home to Mom and Dad's to rest up.

I'm pretty tired and low energy levels. Think I've got some classic
chemo fatigue so I'll be taking it easy.

Usual meds plus eye drops every two hours. Back to day unit for blood
tests tomorrow.

Nausea non ad nauseam (U)

Posted by raetsel at Monday, May 05, 2008

I'm pleased to say I've not had any more nausea attacks. I'm on
regular oral ondansatron and that is keeping it under control. After a
light breakfast I was able to eat normally yesterday.

It was a busy night with bags changing for fluids and cytarabine as
well as 3 hourly injections of follinic acid ( or is that fenolic?
I'll have to look that up ) (It's folinic acid, one 'l'. there's a good description of how it is used here:

My fluid levels are up and I was carrying 4 litres yesterday some oral
fruzamide diuretic got that down to 2 but I've noticed I get
breathless when I exert myself. So the doctors are prescribing IV
fruzamide. I had that last time and it is a real kidney cruncher so
I'll be weeing to olympic standard for today but it does the job.

My energy levels are low today and my blood pressure is a bit low too.
I think this is just the chemo taking it out of me. I'm just taking
it very easy and will be napping when I'm not weeing.

Overall though I'm still pretty chipper. My last bag of cytarabine
finished this morning so no more chemo now just fluids and folinic
acid until my methotraxate levels come down.

Ruff Night (PG)

Posted by raetsel at Sunday, May 04, 2008

Possibly Gruesome - Contains descriptions of vomitting.

I had a "ruff" night because I spent part of it being as sick as a dog. ;o)

I finished my methotrexate yesterday evening about 1930 and a bit later
started on my last new chemo drug 6660mg of cytarabine in 500ml of saline
given over two hours.

The cytarabine was all finished and flushed out my line by about 22:30 and
I would have the same dose 12 hours later.

I noticed my stomach started to feel a bit off around 23:15 so I let the
nurses know. They said they would have to check if there was anything
written up for me for antisickness that they could give to outside the
regular schedule.

Meanwhile I had got a couple of sick bowls ready and at 23:45 I was sick
and up came my evening cocoa ( about 350 ml as the bowls have measuring
lines on them for keeping track of fluid output).

That wasn't too bad as it came up fairly easily with no retching and I felt
relief from the nausea. Unfortunately 10 mins later back came the nausea
and I was sick again but this was harder as there was not much left to come
back up.

This set a regular pattern sick, relief then almost exactly 10 mins later
sick again. Each time was harder as there was nothing left to come up.

This went on for an hour while the nurses got the doc to write up an
injection of ondansatron because I'd never keep a tablet down long enough.

At 01:00 I got my injection and it worked straight away no more nausea and
I was asleep by 01:15

I don't feel too bad this morning though my tummy is a bit sore there's no
real nausea at present. I had a light breakfast of just a slice of toast
and jam, no butter. That has stayed put so far.

I started my next bag of cytarabine at 08:00 and it's just finished next
one at 20:00 tonight.

The doc will write up meds the nurses can give me at any time if the nausea
comes back.

It was a rough couple of hours but I'd had a good run with side effects up
to now.

In other news I'm taking predenisolone steroid eye drops every 2 hours
during waking hours to prevent the cytarabine causing crystals to form in
my eyes.

I'm also having an injection of follinic acid into my line every three
hours. This is to remove the methotrexate from my blood.

When the methotrexate levels are low enough I'll be allowed home. This
might be Tuesday but more likely Wednesday.

Down the line (12A)

Posted by raetsel at Saturday, May 03, 2008

Following comments from Andy and Gareth about breakfast reading ( many a
true word is spoken in jest ) I thought I would introduce a classification
system for posts.

U = Unlikely to upset anyone
12A = 1 or two adult references to bodily functions and the like.
PG = Possibly Gruesome if you are having brakfast
G = Gruesome - real blood and guts stuff
E = Emotional - contains touchy feely stuff about how I feel may include depressing sentiments.

Joking aside for a moment, I haven't posted much stuff at all about how I
have been feeling apart from the odd mention here and there. That is mostly
because so far my mood has been pretty good and I have not had too much
tough stuff to contend with.

There will no doubt come a time when I hit a rocky patch and I do want to
be as honest as practical about the whole experience of MCL in case other
people with the disease or similar are reading. ( According to stats on the
blog I have 21 unique visitors so I suspect that is all people who know me
but maybe not)

However one thing I have found from reading other people's cancer diaries,
as I do from time to time when researching stuff, is that I need to be in
the right frame of mind to deal with the more emotional or depressing
posts. Usually it's fine but some times a post can take a depressing turn
just when my mood is a bit low. Hence the E rating.

So enough waffle here is the meat of today's post.

This post as rated 12A and contains mild references to micturation and
runny bottoms.

In with my normal morning tablets ( allopurinol and lansoprazole ) were two
new ones as a prophylactic anti-sickness (anti-emetic) measure for the
forthcoming new chemo drugs.

One I recognised as a 2mg dexamethasone steroid which helps with sickness (
see I told you 'roids are great, they fix anything :o). The other tablet was
new and is called ondancatron.

According to Dr. Google and Professor Wikipedia Ondansatron (tradename
Zofran) works by stopping the vagus nerve stimulating the vomitting centre
in the brain ( The brain has a vomitting centre - who knew? This must be
what is stimulated if I happen to see Jeremy Kyle on TV by accident)

At about 13:00 I was started on one litre of sodium bicarbonate or sodabic.
According to the ingredients on the bag it's actually got sodium chloride,
potassium chloride and glucose in it dunno where the carbonate is unless it
reacts with the glucose to make it. This is to adjust the PH of I think my
blood or maybe fluids in general, it's measured by checking my wee anyway.
This is run over 4 hours and then replaced so I am on it 24 hours a day. (
Yes that means one bag runs out about 02:30 and sets Ivy's alarms off until

After 6 hours on the sodabic at about 19:00 was our feature presentation :

I was given 450mg of methotrexate in 500ml of saline over 2 hours as a
loading dose and then 1750mg in 1 litre of saline over 24 hours. This is
done to keep my initials levels of methotrexate topped up. This runs at the
same time as the sodabic so Ivy now has two pumps.

Once the methotrexate has finished I'll keep up the sodabic to flush it all
out and the methotraxate levels in my blood will be checked regularly to
confirm my kidneys are getting rid of it ok.

In other news, my fellow inmate in room 5 has been moved to a single room
because he has had a very runny bottom and has a temperature. This could
just be the chemo or it could be a bug so while they test a sample ( don't
think about it! ) he has been put into a single room to reduce the risk of
passing it on to anyone.

Although he spent a lot of the day sleeping I'll miss the company. Still
knowing how busy the ward is, it won't be long before someone else is in or
it might not have been a bug and my previous roomie will return.

I had an ok night but with all the fluids I was up three times to pee (
bottles ready at the side of the bed to save the walk to the loo) plus ivy
woke me up when the fluids had to be changed and once more when I was lying
on the lines. I'm ok at the moment but suspect a nap around 16:00 will be
called for.

Mom and dad get a day off from visiting today. My brother is coming in the
afternoon and Andy in the evening.

Hmm maybe I should have another rating of OLP for overly long post. Sorry I
do go on a bit sometimes. Still the newspapers do bigger editions at the
weekend do why shouldn't I?

Ivy 2.0

Posted by raetsel at Friday, May 02, 2008

I was re-united with Ivy yesterday afternoon but my ever faithful drip stand
and pump have had an upgrade.

The stand itself is of slightly lighter and slimmer tubing reducing the
overall weight and best of all she now has 5 wheel drive. The wheels are on
the end of 5 legs that are in a star formation like the base of an office
chair. This greatly improves stability making the bump in the floor between
the day room and the corridor easy to handle.

The pump itself is also improved, it has an electronic eye that attaches to
the drip reservoir to monitor the drops. This means it's more accurate at
assessing the amount of fluid delivered and only alarms when the bag is
empty or the required amount has been infused.

Yesterday afternoon I was given 800mg of rituximab in 500ml of saline. The
infusion is started slowly and gradually increased evey 30 mins. This is
because the only real side effect is some people get an allergic reaction
and the infusion rate has to be reduced to alleviate it. I'm pleased to say
that I didn't have any side effects. The infusion was finished by about

Rituximab is a mono-clonal antibody that latches on to a part of the
cancerous lymphoma cells ( the CD20 marker as it happens ) and then like a
natural antibody the body's own immune system will be triggered to kill the
cells that have the anti-body.

My PICC line works well for infusions but getting blood out for samples is
a bit more tricky, which is not uncommon for these type of lines. However
deep breathing from me and a bit of jiggling the position of the arm means
eventually we get enough for the usual 3 or 4 phials required.

Today after some fluids with some bicarb of soda to adjust the PH of my
blood a bit I will start on a new drug called methatrexate. This a powerful
systemic chemo that will take my blood counts down again, prolly even
further than last time. I will have lots of fluids to help flush the
methatrexate through. The side effects of this drug, which can appear a
week after it is given, are a sore mouth and throat and a runny bottom. ( I
can't spell diarea [see?] ). However as with most drugs the side effects
are not compulsory, so fingers crossed.

I slept pretty well with just a brief gap around 02:20 but dropped off
again fairly quickly.

It won't get better if you PICC it

Posted by raetsel at Thursday, May 01, 2008

The registrar came to see me yesterday afternoon and explained they were
still struggling to get a slot for me to have a central line fitted but
they wanted to press on with treatment and so they were going to try to put
a PICC line in. That's a Peripheral Intravenous Central Catheter or
something like that.

This is a line that goes in one of the veins in the crook of my arm up the
arm and along the chest into one of the big veins near the heart. This is a
procedure they can do on themselves on the ward.

The snag is that it depends on the quality and accessibilty of the veins in
your arms and then how easy the route is up the arm and along the chest.

They tried my left arm first. I felt a very sharp scratch ( more than you
feel for a normal blood test ) and then there was a warm feeling down my
arm. I thought this was something they had injected but when I looked
across ( I always look away at any initial incisions ) the warm feeling was
in fact caused by the small river of blood running down my arm and pooling
on the protective pad they had put there. This was all perfectly normal
apparently and showed they were in the vein.

Unfortunately this line got stuck somewhere near the shoulder joint where
the first turn is and despite moving my arm and neck it wouldn't go any
further. They decided to leave that line there in case it was close enough
for them to use and moved on to my right arm.

After three painful attempts getting in to the vein in my right arm the
catheter went all the way in and they were happy enough with that to remove
the one from my left arm ( A painless procedure ).

I was then sent for a chest x-ray to confirm the siting of the line. I
asked what the x-ray could show that would mean the line wasn't usable and
was told well I could have a collapsed lung ( though I might have noticed
that by now ) or instead of turning right at the shoulder and across my
chest the line could have gone up into the veins in my neck and towards the
head. ( Cue visions of a head full of chemo )

Thankfully the x-ray showed the line was fine. At the moment I can move my
arm pretty freely though once it has the drip attached to it, it will be a
bit more restricted.

A PICC line is not as good as a central hickman line for this reason but
it's better than the next option which was to put a temporary central line
in through my groin!

So I should be starting my chemo today in my new line.

I didn't sleep too badly though was a bit restless between 02:00 and 03:00