so far, so not bad

Quick update. Still don't like talking about chemo. Despite choosing to write a blog about it. Oh, the irony.

So, how is the first R-Chop session treating me?

Well, so far the dreaded nausea has been somewhere between 4 to 6 out of 10. Which is good news.

I've actually only been sick a few times since Thursday and then, without meaning to get too graphic, it's more of a retch of acid than a full blow chunk-blower.

My getting-quite-good-at-being-a-dad-Dad came up for a few days and he commented on how much better I seemed and how much food I was eating ... I'm pleased to say that I'm eating well .. and took advantage to shovel lots of good food into me.

Getting things out the other end is proving a little more tricky still ... which can make me miserable ... but I won't dwell on that too much. The anti-sickness drugs don't help that situation either, so I've been really stringent with the amount I take. Which is no bad thing ... the less drugs the better. Gakking down 12 or so pills first thing every morning really is a grind.

I am reaching the end of the first phase of this chemo. I've been taking steroids and various drugs to keep me stable - these are now stopping and apparently this can make you feel worse for a while during a second phase that last around a week, but I can't actually see how it will make me feel nauseous ... tired/drained perhaps, but I am optimistic that it won't be worse 'sickness' wise (my pet hate).

I've been at work today (well, this afternoon) - which is pretty amazing - and have been quite 'on-the-ball' and a lot more 'physical' than before. The frustration comes when I'm piling on a bit of healthy pressure on myself,  running around the office, making phone calls, multi-tasking, 'getting moving' - then I suddenly find myself with strange stabbing pains returning in my chest, feeling sick and I then find myself retching in the toilet, whilst my concerned friend brings me water.

Overall though - I'm chuffed to be honest ... I am reserving air-punching celebrations until we've got through a good 10 days - it's only been 4 so far ... but as the title above you says, 'so far, not so bad'.

Onwards ....

R-Chop - first cycle

I am back at home on the chemo couch, feeling a little nauseous but I'm OK.

The good news is that the treatment was relatively painless. It was a long day, the first antibody took 4 hours to drip in. There was then four big syringes to push in (each takes about five mins) and a whole bunch of tablets.

I wretched a couple of times, feel rough throughout but it was not the drama that AVDB was (remember I don't have a PICC line anymore).

I'm not going to write much, as I don't want to think about as it still makes me feel a bit sick - but just to let you know that 'it went'.

Thanks for the texts, emails.

if it's not one thing, it's another. sometimes both.

Right. Pay attention. Big news and all that. Game changer.

I've known some of this for a while, but didn't have the details, so I've kept quiet. Now I'm armed with a bit more information, I'm able to pass it on. All in glorious bullet points.

• The spleen was removed and tested. Lymph nodes were also taken from my pancreas and other areas.
• Tests reveal that all of the above test positive for Diffuse large B cell non-Hodgkin's Lymphoma
• On going back to the original lymph node, taken from my underarm back in December, it was confirmed that this was definitely Hodgkins Lymphoma
• I was therefore showing two types of Lymphoma at the same time (as we now know that spleen was Diffuse B cell Non-Hodgkin's Lymphoma at the same time that lymph node removed was showing Hodgkin's)
• This is very rare ...
• ... but it has been seen, that the cancer 'morphs' from Hodgkin's to Non-Hodkin's - we simply caught it in the middle of the transition back in December (don't ask me to get any more technical that this)
• To sum up this part: I no longer have Hodgkins Lymphoma, I have Diffuse large B-Cell Non-Hodgkin's Lymphoma (which I shall call NHL from now on)
• I am a very special boy, huh?

Breath ....

• New cancer = new treatment.
• Chemo will no longer be the dreaded 'AVBD', but something called 'R-Chop'
• It's not supposed to be as 'heavy' as my previous AVDB treatment - side effects are less intense
• I start my first session on Thursday the 10th June. A few days.
• Each cycle is three weeks
• Unlike AVBD there is no 'A' and 'B' treatment. Therefore, each 'cycle' really is one chemo session.
• I am booked for 4 cycles before another full scan (ie: 4 x 3 weeks = 12 weeks)
• I am limited by the amount of this chemo I am allowed to take, as one of the drugs is basically the same as in AVBD and each treatment raises the dangers of a heart problem. My consultant seems confident than I do have one, despite my protests.
  
  

Breath ...

• I am currently anaemic
• I currently have a large amount of blood platelets - I am at risk of deep vein thrombosis
• I will be expected to self-inject the 'white blood cell' boosters into my stomach, 5 days after chemo (for 3 days)
• I am at high risk from infection after chemo - more so now I no longer have a spleen.
• If I get a temperature of 38+, I must get to Emergency asap.
• It was drummed into me, that I am, apparently, 'very sick'... 
• ... my lymphoma is making me ill, tired etc / not the operation after-effects
• "Have you got any fucking good news?", I did enquire
  
  

Breath ...

• Had I come in showing 'just' this type of B cell NHL, then my 'prognosis' would be very, very good. Around 90% +
• However, as I have this rare morph and type, then sadly, we are looking add slashing those odds down to about 60%.
• Either the Lymphoma will not react to the R-Chop treatment (unlikely, as it did respond partially to the AVBD) ...
• ... or 'relapse' starts to occur. The consultant was reluctant to talk about that. 
• "So that'll be a 'No', then", I concluded.
  
  

And exhale ... you did well to stick it this far.

You're up to date ... I don't have anything to add. What is there to say?

Onwards, onwards .... Once more into the breach, dear friends, once more ... 

that feels a bit sore

First of all, for those that were expecting some of the long 'memories from a hospital' type blogs I promised, I've decided against them for mixed reasons. What is going on now seems more important than back then - and I'm about to post up some Big News.

However, I will very briefly tell you this one story, as I know you all like a soap-opera.

Right before my actual operation, in the pre-op room, I was given an epidural (spinal). I was told if I didn't there would be a tremendous amount of pain afterwards. Ironically, as I came to in the post-op room, I would describe the pain I was in as significantly more than 'tremendous', regardless of this magic spinal fluid.

I went into some sort of shock/shaking fit, shouting for pain-relief. A very long 30 mins later I was injected with something that helped me stop shaking and retching (on fresh internal stitches, oh yes) . This respite was taken as an opportunity to move me to my hospital cell/bed. But the pain soon came flooding back. I called repeatability for help. Some 2 hours later, the nurse who fitted my epidural came to look at where it was placed. It wasn't news to me that it wasn't in place.

Apologies were made and I was told my next best option was a self-administering morphine machine.

Sure.

Just. Hurry. The. Fuck. Up.

Two hours later said machine arrived.

So there you go. For the first 4 hours after having *that* spleen removed there was no pain relief. Pause for a minute and let your own head work out how much that might 'smart a bit'.

The next time one of you females say to me, in your holier-than-thou voice, 'you men don't understand real pain - you never have to go through childbirth', I might be inclined to offer you a Pepsi Challenge on it.

"Here love, let me take out this 8.2kg organ from you - a couple of paracetamol should see you right ..."


I hear-by award myself a 'very brave boy' badge. Pass the sewing kit.

obspleen photography

I'm doing a lot better. Feeling better, eating better and getting some strength back. It's still going to be a little while before "i'm back", but I'm on the road. 

OK ... let's talk about this spleen the hospital removed then. I am still not in the mood for writing very much, so this blog will be perfect, as a picture paints a thousand words.

Linked at the bottom of this spleen are two images.

WARNING, WARNING ... FLAILING ARMS ... 

These images are graphic. They are of a very large, cancerous internal organ remove from the body. Do not click the links if you are squeamish or upset by such images.

Right, before we begin, some points ...

1. The hospital took a series of photos of my spleen on removal. I had to sign permission for the them to be used in medical references etc. According to the consultant who got me to sign, this is very rare nowadays, as most things have been tagged already. The snapshots below where taken on my Blackberry from the originals - photos of photos, as it were. I am allowed to request originals.

2. The weight of the spleen is, apparently, 8.4 KG. (1.3 stone!) This is ridiculous - the weight of carrying twins! - and I refused to believe it at first - but three people in the hospital have confirmed this. The matter it is made up from (dead cells, dead blood etc), is very dense. It also explains why I went from just over 12 stone (despite have no muscle) to under 11 stone.

3. OK, finally ... "A normal Spleen is about 12 cm long, 7 cm wide, and 250 cm3. It is shaped like a largish fist" ... so, clench your fist, take a look and then take a these two pictures.


image 1
image 2

hating the alien

I guess I better give you something - the hits to my site keep coming and no updates from me is just not good enough. You deserve something.

Here is something. Predictably, it's another misery blog.

My first few days at home have been difficult. I had a few hours to myself, which resulting in some sobbing and then my father came up to be my cook, cleaner, waiter, taxi and friend. He did a sterling job, to be fair and we got on very well. More importantly, he kept me from drowning in self-pity, over these first few days of home-healing.

Perhaps surprisingly, my main pain 'complaint' has been coming from the stomach and gut. Huge trapped wind, bloated stomach, nausea (including vomiting, of course) and general 'bottom problems', resulting in dreams filled with the awareness of the pain.

I look in the mirror. I look like an alien. My arms are thin, having lost their muscle and shape over the last months. My stomach is extended, with a scar that runs from the centre of my chest to the groin area, taking a detour around my belly-button. I am white. Think closing scenes of Close Encounters.

Christ, I want to run. The mini heat-wave in the UK has reminded my that only last summer I was managing to get up and run 10 miles. Now, I cannot walk more than 400 yards without needing a sit down. It is utterly soul-destroying. I look out my window and see joggers on the canal - each one reminding me of how I've lost all my strength and fitness. God, how I want to start training again - but then comes the ultimate crushing thought ...

The thought is this: I'm recovering from this operation to get well enough to start chemotherapy again.

Getting better to be knocked down again.

Give me a break, Lord.

However, let's put a positive on this. Each day I am getting better. The stomach is settling down. I am eating better. My mind is waking up and I'm beginning to think about work, about music, about interests, about futures, about health ... I see this stage of recovery as days rather than months.

As my father wisely says, 'pain does not have a memory' and one day soon, I will wake up without it and have a normal day and this stage, like all my other stages on this ridiculous journey will just be a bad memory that I won't return to very often.

I've so many stories to tell you from hospital ... they can wait for now. The spleen was horrific. So horrifically large and rotten that the hospital took photos for medical research, which I had to sign off. They don't do that often. But that is for another blog - let me get back to some health, some writing ability, some wit and I'll try to piece together the low-lights for you. Some were very low.

So, there you are and here I am. Killing time, watching the healing and hating the alien.

Speak soon ...

Home

I am home. Sitting in the silence after the chaos, tearful and exhausted.

I've been to hell and back at least twice but have survived and am now lying on my sofa listening to the silence and the birdsong.

There's lots to tell and some horrific images to show but I need time to rest, piece it together and turn it into something comprehensible.

Thank you all for the messages. Sorry I couldn't reply to them all.

Big hug ...


Sent from my BlackBerry® wireless device