Steroid withdrawal

I think I may have mentioned in a previous blog that last Friday was my last full dose of steroid treatment (105mg per day for the Ops types...).

Rather than go cold turkey on it, I am now on a week of "tapering" - 60/40/30/20/10/5mg doses that will end this Sunday (the 5mg dose).

It's playing merry havoc with my system at the moment, principally in the sleep department it would seem, the effects whilst on steroids were:

• Increased appetite
• Keeps you awake
• Muscle loss(!) from biceps and quads

Now that I'm coming off of them I would expect things to change but still seem to have the appetite - talking with another Consultant yesterday, he mentioned that the fatigue I particularly felt yesterday could well have been due to the change in steroid regime.

Tomorrow I'm down to the 30mg level for a couple of days so we'll see how things go.

Treatment Progress - Day 30

So pretty much a month in - unbelievable.

This last week I would say on the whole seems to have been a good one and certainly I'm feeling brighter than last weekend (which was the last of the first round of IV chemos).

On Wednesday was the "standard" Caspofungin drip, the lovely Asparaginase injections but also the intrathecal (lumbar puncture) - although the leukaemia shouldn't make it to the Central Nervous System, chemo is applied there anyway just to make sure.

Whilst an in-patient on the ward at John Radcliffe I had one done and was given sedative that totally relaxed me, however the Day Treatment Unit isn't set up for the same procedure and I was given an "happy pill" that didn't work.

Consequently the process was pretty uncomfortable to be honest and stressful - especially as it still wasn't happening after the first two attempts.

But like they say, 3rd times a charm and I consented for them to carry on (pointless not to after all of that) and success, the problem seemed to be a particularly tough tendon in my lower back that required more force than originally planned to get the needle in.

Anyway - 'tis done until the next time for which I shall run head-first into a wall to knock myself out if needed!

Sarah, as always, was my rock and salvation and helped me focus & breathe through it which is about as much as you can do I think to try and "relax" through the procedure.

Fortunately no side effects from any of this other than a sore back of course, Thursday quiet therefore just recovering and getting rest.

Friday was meant to be a quick day (and was to be fair despite some delay at the beginning) being just Caspofungin & Asparaginase. It has been 3 weeks though since the Hickman Line went in which meant that the last stitches could come out and that was duly done - I'm now waterproof again apparently!

As well, Friday was the last day of high dose steroids and as of yesterday I've started a reduced dosage to taper me off of them by next weekend.

With the last Asparaginase jabs tomorrow, I will also be able to stop taking the Allopurinol too so things are starting to lighten up a little and I hope to get some strength and energy back.

So where am I? Well, basically I'm at the point where they want to see the blood counts come back up and the numbers to indicate that I'm ready for Phase 2 Induction (section 8.5 of the UKALL XII protocol); it says that Phase 2 should start irrespective but I believe the current thinking is dependent on white cell count.

Sausage & Egg McMuffin

OK - this is getting an obsession but hopefully it will ease pretty soon...

Part of my treatment is to take a pretty substantial amount of steroids everyday, many side-effects (my thighs and biceps have really shrunk) but biggest thing is HUNGER!!!

You may have noticed a couple of references to McDonalds in previous posts, I wouldn't say I'm obsessed but I do like it once in a while but one of the biggest things that has driven me to distraction is that on hospital days we get up early, I have enough breakfast to take some of my meds - the stronger stuff I wait until I get to the hospital as there is usually a wait from us arriving to the Day Treatment Unit opening - but every time to the hospital we drive past a McDonalds on the London Road:


View Larger Map


just as I get ready for "second breakfast" (yes, I know this officially makes me some kind of Hobbit) and because of how my taste buds are (again from the tablets), a massive urge for a Sausage & Egg McMuffin takes over.

Unfortunately, it's not allowed as I'm supposed to be off fast-food and takeaways because of the neutropenia - there is an excellent document that people should be aware of as to how to protect themselves, whilst at the hospital I was surprised seeing people eating salads which although are obviously healthy for a normal person, contain bacterial risk for those with no/low immune system.

Anyways - at the hospital there is a canteen where I can get something that helps stave off until lunch time and allows me to take the rest of the medication.

Tomorrow (Friday) is my last day of full blow steroids, after that I will be tapered off of them to allow my body to adjust to the withdrawal - it will be interesting to see how that affects things.

A "cancer free weekend"

So following on from the General Progress update, I'd get it off of my chest the more personal side to this last weekend.

Firstly, I want to make it clear that I am extraordinarily grateful to everyone for their love and support - I do not take it for granted and indeed draw on it as my reserve for when things are low; I just don't want the following to be taken out of context or misconstrued.

With the physical effects of the chemo (nausea, fatigue) came a general depression and a whole feeling of being thoroughly fed up with this whole thing - stuck in the house and mainly the bedroom, not being able to help out, missing the lovely weather & going out as a family, not popping into a cafe or McDonalds for a little treat, even washing the car, DIY or grocery shopping.

Also, for 4 weeks now, so much focus has been on me and people asking how I'm doing it all got too much and it just made me want to scream!

Like I say, I don't want to sound selfish/ungrateful but ordinarily being quite a private person I just felt so overwhelmed and wanted to get away from it all to the point where I just didn't want to talk about it to anyone and tried to deflect questions back to the other person as to how they were doing and what's new in their life.

I wouldn't call it denial of the situation but I think it was just my general coping strategy to try and take more control and be "normal" again.

The other thing I tried to do was set myself some little goals to aim for - as Sunday was Mothering Sunday in the UK, I made an effort to get up early with the boys and bring Sarah breakfast in bed and the cards/presents they had made. It gave me a great deal of satisfaction to do that one small gesture but again helped make things feel normal.

It seemed to work for me as well as talking about how I was feeling to my Dad and to Sarah, the worse part was trying to explain to the boys why I was feeling the way I was but they are resilient and seemed happy to go off and play and be boys that it wasn't so bad (I hope).

Anyways, that's that off of my chest - physically I feel better today, yesterday I learned that what I experienced was to be expected and so feel brighter again.

Bottom line I guess is that we all have a dark moments of doubt, depression, despair - everyone is different but for me figuring a coping strategy as quick as possible, sticking to it and being open & honest with those that you love and trust to share your feelings and concerns seemed to work for me.

Of course, knowing so many people are rooting for you and doing what they can too is always in the back of my mind and helps enormously - thank-you!

Treatment Progress - end of Phase 1

Ugggh, awful set of days since Friday and to be honest I've only really just got myself round to being able to write about it.

Friday (20th) was the 4th and last of my Phase 1 induction IV chemo, more chemo is to come but that's for a little later. It also happened to be the last day of the outpatient ward being open at the John Radcliffe ahead of moving to the brand new building/ward at the Churchill (still in Oxford, only about 2 miles away but it is a little easier for us to get to as we now miss the major roadworks).

Because of the move, the ward was shut except for one bed as it was a marshaling area for crates & equipment and myself and the other 2 people booked in for the day had our chemo in a little office - very cosy :-)

It was over pretty quickly and we were home early but right from being home, I started to feel really low very quickly - mainly in the form of extreme fatigue and nausea. To cut a long story short, although the anti-nausea medication helped stave it off physically, it was a rubbish weekend of feeling very low and depressed.

On the "plus" side - I had an opportunity to talk about this with one of the wonderful nurses yesterday about the weekend and I feel somewhat "normal" in that what I described matches a lot of other people's experiences.

Today, physically I feel OK but just really, really tired - I probably ought to sleep more during the day but I don't want to be waking people up in the night by altering my sleep pattern too much; plus when I wake up I'm usually hungry so that's a pain finding something easy and quick to stave off until breakfast!

This week is a relatively easy week I think for treatment - "just" Asparaginase jabs & Caspofungin IV (Mon/Wed/Fri) but tomorrow (Wed) I will also have an Intra-Thecal (spine) jab - I will be taking the sedative option to try and knock me out!

I'm still in the Induction Phase but between Phase 1 & Phase 2 - start of Phase 2 will be determined from my blood counts reaching a certain level again before more blasts of IV chemo, hopefully I will be getting some strength up at the same time as hospital visits will increase to 4 times a week for 3 weeks :-(

Main risks at the moment - the neutropenia, so keeping myself to myself as much as possible to avoid infection risks...

On the peripheral neuropathy front - tips of toes are starting to be affected I think but it's not something I'm usually focused on so difficult to tell. Fingers though are a nightmare, dull numbness about half-way up each finger and thumb - doesn't stop me from doing things but it's just a generally unpleasant sensation and makes delicate tasks a little fiddly.

Finally for this post - hair. I think after a long battle to hold on to it, it's starting to go. Not sure if it's all coming out or just thinning. Jake is excited about the prospect of me going bald, I'm not sure I share his enthusiasm but will post a picture if I do as I'm kinda curious myself now!

Neuropathy & Neutropenia

There are some classic and/or well known side-effects of chemotherapy such as nausea (for which there are several excellent medications to help control this e.g. I'm taking Cyclizine & Ondansetron) and hair-loss (alopecia). So far my hair hasn't started coming out yet although I've had it shaved pretty close to make it less of a thing if/when it does (both for me and Sarah & the boys).

Two things I'm experiencing that are possibly not so well known are Neuropathy and Neutropenia.

• Neuropathy - specifically Peripheral Neuropathy. Basically as a result of the chemo, there is a constant numbness/dull "pins and needles" in my thumb and fingertips.
  It's really more of an annoyance than anything else but I do need to watch that it doesn't extend further into the hand. From a practical perspective, obviously I'm still able to type but using my phone is getting a little harder because the buttons are obviously smaller, especially on the slide out keyboard.

• Neutropenia. This one is harder as basically it means my immune defences are really low. I have to be careful what I eat (I'll blog something about that some point soon as it is very important and could be useful to others) and avoid crowded places (like hospitals I guess!) as catching and dying from infection is a genuine risk.
  This of course limits the number of people I can see currently, going out, having a curry or McDonalds(!)
  My last blood count puts me severely neutropenic but the medication I'm on is looking to stave of viral, bacterial and fungal infection and coupled with taking regular temperature checks to make sure all seems normal.

Tech Alert - OK the "gadget-boy" in me cannot control itself anymore. I really like my phone, it's an HTC S710, Windows Mobile device. I've been a huge fan of Windows Mobile right from the days when it was known as Windows CE (unfortunately shortened to WinCE).

Back in what must have been around very late 90's, I was very lucky to win a HP Jornada 540 in a competition and very quickly got introduced to a device that carried my photos, music, Outlook, e-books and notepad in a very compact and actually quite reliable form. It's interesting to see how other companies are only now at last catching up with what Microsoft was able to commercialise way back then. It would be remiss of me though not to mention the Apple Newton at this point which more than likely got the Redmond brigade on the right road.

The phone was from BT - I didn't like their customisation of Windows Mobile so burned in an upgrade that has proved ultra reliable and stable but more importantly allows me to keep in touch through SMS & mobile internet when at the hospital.

You've got a what in your chest?!?!

A tube - or more accurately a Hickman Line...

Most people probably know that I am awful with things medical (injections, having blood taken etc.) - not just having the procedures done but people talking about on themselves or sometimes in general as I have a completely irrational thing of imagining it happening to me as they speak, I know weird.

If you are a bit prone to this yourself, you may want to skip this posting.

True story - the height of my infamy on this front was probably when Alien 3 opened back in 1992. There is a scene where an autopsy is carried out on a little girl, you don't see anything but you see the prep, the tools and you hear it when the chest is being cracked open. First time I saw it no problem as I didn't know it was coming, however I ended up seeing it again with my housemates at the time and seriously, I quietly passed out in the cinema - what a nightmare!!!

So, with the amount of blood that needs to be taken to check levels, chemo going in etc. this whole thing is a bit of a nightmare and this is where the Hickman Line comes into it. Essentially it's a main line to the heart, the picture gives an idea as to how...

The procedure takes a while and a specialist team of nurses (certainly at the John Radcliffe, not sure for other hospitals) performs it in the ward.

Some people have it done with just with local anaesthetic but I know that would be beyond me to as there was an option to be sedated that 's what I did and so slept through the most of it but was awake for the final bit.

Being absolutely honest - I am still a bit freaked out about it even after a couple of weeks now and I try not to look at it, however the benefits are immense as blood is taken and drugs administered without you feeling a thing saves your arm veins getting shot to pieces.

So, I'll stop at this point as I was hoping that writing about it would make me come to terms with it a bit more but unfortunately not that much :-(

If any one has ideas as to how to get over this nonsense - leave a comment!

Told you I wasn't feeling well...

I was listening to the radio the other day and it dawned on me that I haven't really indicated the symptoms that lead to the diagnosis.

Given the amount of exercise I do, I would say that I'm reasonably fit and fundamentally know when something "isn't quite right" - the non-disappearance of what I thought were muscular pains after a strenuous gym session prompted the sessions to the doctor but looking back on this all:

• Deep "muscular" pain (it was actually pain in the bones because of the blast cells)
• Nose bleeds that didn't stop quickly (because platelet count is affected by the blast cells)
• Weight loss that people were commenting on (and I thought it was because of more activity and better diet :-( )
• General tiredness/fatigue (haemoglobin levels dropping meaning less oxygen being carried around)

This came on very quickly, I was told that had I have had a blood test in November 2008, everything would likely have checked out fine.

Bottom line - don't be a hypochondriac but do listen to your body, if multple things start occurring get a proper check out to include a Full Blood Count.

Phase 1 Day 20

So from the "Ph pos" flow chart in the UKALL XII posting, today is Day 20 of Induction Phase 1 and I've been over at the John Radcliffe as an out-patient last Monday & today.

We're leaving early for the hospital to beat motorway & Oxford traffic (there are major roadworks near the hospital) plus getting to the hospital car parks early because they fill up so quickly. Journey time isn't bad actually and probably comparable going to Wexham all things considered!

Monday was a "short" day as it was just taking blood for the blood counts, a reaction test to the new medication being introduced (Asparaginase) and, as there was no hypersensitivity detected, the Asparaginase shots themselves which is a delightfully stinging injection in each buttock...

Moving swiftly on to Tuesday - quiet day at home. Actually felt pretty good and broke out of the confines of the bedroom to be able to have lunch and tea downstairs - it's not all peace and quiet at home though, major building is underway for the new Holyport Manor School, below a picture from our bedroom window...


Today though was a longer as in preparation for the IV treatment on Friday, 3 units of haemoglobin plus the Caspofungin & Asparaginase. All went well though and hopefully Friday will be relatively quick - it needs to be as they start packing up that day ready for the weekend move to the new specialist cancer unit at the Churchill Hospital, more on that when I go for spikes in the bottom on Monday...

The Anthony Nolan Trust

For those who don't know about it, The Anthony Nolan Trust was founded back in the 1970's and through the pioneering and visionary drive of the founder, now operates one of the largest register of donors in the world and through connectivity with other national registers now offers access to over 11 million donors worldwide.

Getting down to brass tacks, Bone Marrow Transplant is the only viable option for long(er) term survival, so I've been doing a little research myself tonight and working with some fantastic friends to try and drum up support for getting a slighltly better chance on tissue typing.

If you are interested in joining The Anthony Nolan Trust Register, more details can be found here.

UKALL XII

Protocol 12 (XII in Roman numerals) is the current treatment regime in the UK for Acute Lymphoblastic Leukaemia (ALL), hence UKALL XII.

There are variations in UKALL XII protocol depending on being Philadelphia positive or negative, a lot of information is available at the Oxford University Clinical Trial Service Unit. Specifics around UKALL XII protocol can be found below:

• Complete description of the UKALL XII Ph+ve protocol
• Flowchart of the medication regime for UKALL XII Ph pos
  
• For completeness, the flowchart of the medication regime for UKALL XII Ph neg

NB: I am not a medical professional, these are links I found when informed that the treatment regime was probably available on the web as hard copies were not to hand at the hospital. As with anything, these documents may get obsoleted and should be treated for informational purposes only - speak to a professional if you want the latest!

Taking the news...

I'm not a deeply religious person (I'm a lapsed Catholic I guess) so I'm not intending this particular post to be profound or anything like that - in fact those who know me will probably see this as part of my general pragmatism! Here goes...

To be honest, I knew something wasn't right when I was asked to go to Wexham Park - having to go to hospital for a follow-up on the blood test made me suspect something was coming and when I arrived at the Eden Day Unit, I knew something BIG was coming owing to the number of posters around the place indicating support groups for things like Lymphoma.

Mentally/sub-consciously then I think I was gearing myself up for significant news and so when the diagnosis was confirmed I actually felt huge relief that the ailment was at last identified as it completely explained all of my symptoms and made me feel "normal" in that the weird nose-bleeds, feeling tired and achy were not necessarily down to stress, over-exercise or me being an idiot but there was actually something really wrong!

In all honesty I didn't find the news difficult to take - partly because of the above, partly because the medical staff were extremely professional and didn't beat around the bush in presenting the news and partially, I feel, owing to my "let's get on with it" nature; as far as I'm concerned, we know what the problem is so how do we go about fixing it?

At the same time though I'm not pretending that I was unemotional about it, being faced with your own mortality brings things into acute perspective and there were tears especially when I saw how the news was affecting my wife who was able to come back from work by that time - it is easy to forget how the news impacts others in a situation like this.

My main breakdown though was the thought that this was something I was going to pass on to my children - the thought of me tainting their lives preyed heavy on my mind and it was an enormous emotional relief when I was told that this is not hereditary (in either direction) - that helped me open up, from that point on it was "right, what's next?"

So all in all, in a very strange way, this seemingly total random event has actually been good for me; strangely I feel happy again - it has slowed me down and brought me closer to family, friends and even my faith. It has helped me realise what's really important in life - little things like making and hearing your children laugh and having the genuine love & support from amazing friends and family.

I feel blessed therefore that this will ultimately be a genuine life-changing event.

There are numerous examples/models of dealing with change management (as people I've had the fortune and pleasure to be their manager or mentor/coach well know!), but one I've just found seems to be the root research the The Kübler-Ross grief cycle


I think throughout my life/career I've been very fortunate to move on to the acceptance phase pretty quickly, maybe I'm daft in not spending more time on the other phases but as far as I'm concerned, things are what they are and you have to make best of the situation - I'm sure others have differing opinions, please feel free to comment!

Everyone is different though and people will of course react differently. However from my perspective though, I just want people (especially immediate family) to know that I have never felt angry about this or that someone or something was to blame - my philosophy is that energy is far better spent on looking to the positives and focusing on how to move things forward.

I believe Positive Mental Attitude is key and I want to thank friends, family & professionals for the awesome support being shown to help maintain this.

Two and a half weeks in...

So blogging has been slower than expected (sorry) - mainly down to fatigue and actually finding the time between sleeping(!) and hospital.

First intravenous chemo was in hospital 28th Feb and I've had 2 more since (6th & 13th March), I'm also on oral chemo to handle the complication of the Philadelphia chromosome too.

Left the John Radcliffe as an an in-patient on the 7th March and was over at Wexham Park on Mon 9th & Wed 11th for treatment (Caspofungin) and was in Oxford again (as an out-patient) Friday 13th for IV chemo (Vincristine & Daunorubicin).

Had to go back Saturday 14th for haemoglobin transfusion (3 units) which literally took all day. I was over at the new West Wing ward (still at the John Radcliffe) for this - amazing how modern the new ward is it's actually part of Neurosciences but haematology have some beds there.

Recovering today ahead of Oxford next week (Monday, Wednesday & Friday) to supplement on some new treatment - this is all part of the UKALL XII protocol which I'll look to blog later.

Hello world!!!

First time blogging, so forgive stylistic errors and the such.

Thought a while about this and in the end decided "why not?" - it's clearly a very personal thing but at the same time I figure it will be cathartic for me to capture mad ramblings but also may provide useful information for others as I intend to capture useful links (somehow, probably a "Resources" label) to share and as I intend to get over this, it could be useful/interesting to read back on.

So, my name's Chris - coming up to my 38th birthday and until 3 weeks ago in pretty reasonable physical fitness, non-smoker, very light drinker and eating as healthily as you can as an office worker when all of a sudden an ailment strikes that eventually (but very quickly) gets diagnosed as Acute Lymphoblastic Leukaemia (ALL - and you can probably tell by now from my spelling that I'm British ;-) )

Starting this blog and looking back on events to date, it's all been a bit of a whirlwind.

What started off with what I thought was muscular pain from over exertion at the gym but when initial pain killers didn't work and the pain was getting worse I had to take myself off to the local A&E one weekend for some help, that was 14th Feb.

The doctor there gave me something else and a diagnostic based on the best of his ability and the equipment to hand but the key thing he said was to follow up with GP on 17th who critically scheduled blood tests for the 24th Feb.

Reflecting at this point, I guess diagnosis had been pretty slow (considering the seriousness of the underlying ailment - but hey, who suspects leukaemia in an otherwise healthy bloke as an initial diagnosis?!) but from that point on I have been stunned and awed by the efficiency of our beloved NHS.

Something must have "red-flagged" me in the system as I heard the next morning that I had to get over to the local major hospital (Wexham Park in Slough) - I am eternally grateful to the unknown skilled analyst behind the scenes who spotted the problem and obviously made the appropriate notifications.

More tests were conducted there in the afternoon, sent over to Oxford (John Radcliffe) and by about 19:00 that same day (25th) my condition was confirmed and presented.

Thursday we started organising ourselves and Friday 27th February I was admitted to John Radcliffe!

I've since been discharged as an in-patient and am on sick-leave at home but treatment is intensive and frequent hospital visits are required, this is the start of a long journey...