Head down and out the other side

After spending a lot of time around the house healing from my liver operation, I finally resumed chemo for the last two cycles. I really couldn't stand being back on the drugs - same horrid steroids to counter the horrid Oxaliplatin, but still being lreft with constant horrid nausea. Problem now being my body knew what was coming, so I was getting nauseous before I'd even had the drugs, psychosomatic effects I suppose.

So I decided to shell up, just get through each day, which was probably not the most uplifting thing I could have done for myself, but I guess I was thinking now about that light at the end of it all. And so here I am, two of the longest cycles over, still tired with LOTS of Cetuximab rash all over my head, scalp and body, just waiting for it all to die away and feel like a real boy again.

But I do remember the day, last Thursday, when my Oncologist confirmed that all the cycles were over, there were no more drugs to take, and the next step was an initial scan to confirm that everything has worked. I knew this was the next step, but hadn't realised how shut off I'd been getting there, so it was good to find myself smiling all day, and maybe even a few tears of happiness too.

It's coming up to a year since my diagnosis, and I think by the time the side effects have mostly worn off it will be a full year. It has not been a year defined by cancer - I wanted to make sure of that and be lucky to have enough support to carry it through - but I am already looking back over it thinking "wow, how did I get through all that without freaking out". I guess the answer has always been "one day at a time", but without the love and support I've felt from friends, family, and the many wonderful people on this forum, I suspect each of those days would not have been half as bright.

No, it won't set off metal detectors - it's plastic

Yesterday involved a long day at the hospital giving swabs, bloods and generally preparing for the main show - surgery !

... hold on, I wasn't having surgery, was I ?...

Well, I'm still not having liver surgery, and instead I am resuming chemotherapy starting this coming Monday. But the pain the drugs were putting my arms through was getting highly unpleasant, so my oncologist and I agreed that a portacath was the way to go.

This is a small plastic bump that sits under my skin on the upper chest. The bump has a silicone membrane that allows needles to penetrate and remove bloods or inject fluids. From the bump, there is a long tube that goes down a main artery and to the main blood flow into my heart. The pain in my arms was coming from the arm veins only moving 10ml blood / minute. This meant it took a long while for the chemo drugs to dilute around the body, and the concentrated dose in my arm was causing the pain. As the main arteries move around 3 litres of blood / minute (e.g. 300 times faster) this should remove this localised pain - one of my least favorite part of the oxaliplatin injections.

The operation to put this in took around 1 hour and was a complete success so far. But for the next 7-10 days, I need to be careful with the stiches, as there is a 2-3 inch incision where the portacath was fitted. It's also quite painful, like a very nasty bruise on my chest, but also one I need to be careful not to suddenly jerk or move around too much. A few over the counter pain killers are keeping it quite manageable, but I hope it's feeling significantly better by next Monday for it's trail run !

The surgery has been cut

Took a long lazy day today just relaxing and getting my thoughts together. One of these thoughts, around 4pm, was that I'd left my phone in the other room, and when I went to fetch it I realised I had missed a call from my liver surgeon relating to yesterday's scan !

The message was that there was nothing distinctive on the CT scan to operate on - the lesions or "metastasis" on the liver were unclear which indicated the chemo was having a good effect on reducing them.

So it is the opinion of the surgeon that no operation should be attempted at this time, I should resume my treatment, and only if things reappear on a later scan should we attempt surgery. My thoughts are that this might mean I only delay a needed operation, potentially prolonging the time I am affect by this condition, but on a more positive note, it may be that no surgery will ever be required and the drugs can cure the liver metastasis all by themselves - which would be excellent.

I have had my month off chemotherapy, a break to allow myself some time to get my head together and be reminded what life is like outside of the drugs. I feel I am ready for another 3 months of treatment now, and hope future scans continue to offer the positive news that yesterday's scan did.

Cold Turkey before Xmas

So today I had my last injection, and tonight I am due to swallow the last of the Cepecitabine tablets. My right arm still hurts a little from a fortnight, my scalp is dry as heck and a couple of my fingers are starting to get quite painful around the nails... but I'm still in one piece !

This morning's MRI scan was delayed due to a broken MRI machine, so I am due to return to their other clinic tomorrow morning to get that done, after which I have an appointment on Thursday to discuss the next steps. Only then will I know 100% if we are going ahead with surgery, which would mean a break of Chemo over xmas, or if they have other things in mind. If they say otherwise, I will scream, but I'd rather do what's best advised rather than what suits me.

Got most of my xmas shopping done over the weekend too (much of it online) so looking forward to a pleasant and manageable run up to xmas holidays. Overall feeling quite confident that half of this is all behind me now, and with help, patience, experience and strength, the latter half will go even better.

More when I've spoken to the doctor on Thursday...

Inejction #4 - battling through it

Yesterday's injection was much-dreaded. A long seven hour session at the clinic, as it was a Cetuximab AND Oxaliplatin session, and also because we slowed the Oxaliplatin down to take three hours instead of two.

This may of helped reduce the reaction, which was still painful like last time. Pins and needles up and down my arm (right arm, this time) and lots of stiffness and soreness. But I'm fighting through it this time. I got up at a good time, got my pills down me, and spent the morning chopping and preparing a tasty Heston Blumenthal Spag. Boll. (8 hours cooking time - yum) so that I was doing something and using my arm muscles, not resting them. The little pain I get from using the arm is somewhat countered by the movements slowly reducing the pins and needles and making me feel less "crippled" by the painful arm.

So all in all, emotionally this cycle has been so bad yet. For the first three days, I have to take the stronger drugs, including steroids that really wire me up, but once through them I hope to come out in good shape. I am also cheered that this might be the last cycle for a couple of months now, letting me look forward to christmas and snowbaording in the new year.

Bah, Humbug

So I had my (somewhat brief) meeting with the liver specialist. Was a little annoyed he had not seen my latest scans - so what were his current decisions based on ? - but was partially to blame as I had been advised to bring the copy I had along with me, and had forgotten to do so.

In any case, he said that as I was responding to the Chemotherapy, I should continue with it for a little longer to ensure the required surgery was as minimal and risk-free as possible, advising me to continue for SIX cycles. I had been hoping it was only to be four, as these last two cycles will fall across the Christmas holidays and my planned snowboarding weekend in January, all the way up to the 1st Feb - which means I'll get a nice present this year for my birthday anyway, as I would then come of Chemo for February in preparation for surgery in March.

No date was set in stone for the surgery though - More CT / MRI scans after the 6th cycle would determine what happened next. There is a small outside chance that the chemo might "clean up" the liver all on it's own, but this is quite rare.

In truth, right now, I'm gutted. I was looking forward to a "Chemo free Christmas", esp. as each cycle gets harder. I had put these dates and plans down as a mental crutch - waypoints to help me get through the long journey ahead, and in 10 mins with very little information provided, I've had it all messed around and shifted with what seemed to be a fairly uninformed decision. Probably not the wrong decision, and already I am mapping out what this new news means and finding solace with what it might offer : cheeky snowboard week in February anyone ? Might also be up for a mini-birthday celebartion now as well. And having my folks look after me over xmas week when I am struggling with the nastier part of it is surely not a bad thing.

All of which reminds me it's injection day on Monday. &^%k. With these extra cycles now planned, am I once again going to persue getting a "long line" or "port" fitted, that will allow the drugs to be adminsitered straight into my central blood stream, not via my poor arms. This should remove the pain in my arms which is one of the very worse side effects, after maybe the vulnerability to cold.

Overall : Bah, humbug.

A scanner lightly

Yesterday I had two scans taken - a CT and an MRI scan - the check the progress of the chemotherapy I have been taking now for almost 2 months.

The CT scan showed that there were no other "mystery spots" other than what was on my liver, pretty much as expected. The MRI scan then offered better imagery on the lesions on my liver and was compared to the previous scan I had the day before going in for surgery (just over 3 months ago now).

The MRI showed that the largest lesion on my liver had reduced in size a little, and a smaller cluster of lesions elsewhere on the liver was not as pronounced. Which in summary is great - it means the secondary cancers (which we must surely now presume these lesions to be) are shrinking under the chemotherapy drugs I am taking, and hopefully will be easy to remove.

I have a meeting with a liver specialist next week to talk about what exactly the new MRI scan shows, and what my choices are regarding removing them. It is expected we will book some surgery for this; surgery which needs to be at least 1 month after I stop chemo, and preferably not much more than a month. So it is my hope we will stop the chemo mid-Dec (which is after one more full cycle) and schedule the surgery mid-Jan, giving me xmas off. Which would work well for enjoying that time with my family, as well as the cheeky snowboarding weekend I've booked in the new year !

Full of chemicals

Still battling through first week of cycle three. It's not been pleasant - my arm still hurts, although somewhat less than Tuesday, but the drugs are pushing me on edge as always. With the addition of the Oxytetracyclene (to reduce the acne side-effect of Cetuximab - which it is finally starting to do) I am on about 16 pills a day, most of which get my system pretty wired. And with a little nausea I feel just like throwing them all up :(

Mimi took this week off and has been taking care of me - perhaps this is why the blog is less "look at me coping" and more "look at me being pissed off with things" this week. I've had less need to soldier on and keep my life going, and have been allowed to just flake out all week, knowing I'll still be fed, bought drinks and generally looked after. I miss coping, it felt good, but equally I guess I need an off-week, some time to just throw up my hands and say this is hard work and I'll be glad when it's all over and until then, things are hard.

Thanks for the offers of support this week - I've generally just kept myself to myself and spent most of my time with Mimi. Maybe next cycle I can call you all back ! It's hard to invite people over when you know you are just going to be rubbish, and probably not up to much chat. But the whole "waiting for tomorrow" thing is not a good attitude when tomorrow is still quite a few months away.

Every day of each cycle gets a little better - my touchstone and mantra now. Today I pottered around Camden a little, saw a movie and enjoyed a tasty burger dinner. Tomorrow I might manage a little early xmas shopping in Angel. Life still potters on around the crappyness, and looking forward to at quite a few decent days before the next cycle has to begin.

Cycle three start here

Fine - so it's cycle three.

Went to the clinic yesterday, go the Oxaliplatin in my arm - the second dose that has gone into the left arm. And f**k me it hurts - not just the usual deep pain in the vein, but most of the arm has gone numb and tingles, like a permanent pins and needles in the muscles. Really not a happy camper at all - had lots of trouble sleeping and pain-killers don't really do much.

Might need to discuss other ways of getting this horrid drug going forward - one option involves a line in your arm with runs a tube up to the heart - which means no localised pain in the arm, but does mean I get a cannula sticking out my arm for the treatment duration which might be even more depressing. Or a surgical operation can put in a central line in my chest - which sounds like the least painful option, except for the whole "going for surgery" part.

For now, everything just feels like hard work and I just want to lie down and wait for it to go away. But that's going to take days, so guess I need to fight through that, get some food, take all my daily drugs and keep up with life. Overall - Meh.

Second cycle - all in all, I've just been hit by every brick in the wall

Well, 6 days into the new cycle, and I'm only really just finding the time and energy to blog about it. It's been a bit of a "ton of bricks" week - have been feeling really tired and low on energy - as well as combating the nausea and cold sensitive arm pain that comes with the first half of each cycle.

Fortunately, I did see this coming somewhat, and had arranged with work to NOT come in for the main chemo week. This left me free to rest in the house, having plenty to time to sort out my various pills and lotions to combat the side effects, and mainly to rest. Physical execution is one of the things that heightens the nausea, and being able to climb under the duvet when the proverbial ton of bricks smashes you around the head is a godsend.

This week has been harder than last cycle - perhaps I am feeling more dread and less curiosity going into it, knowing what to expect this time. Also the Monday itself was particularly hard work. I met my parents in town first of all, which was very nice, and they came to the clinic with me. I was due to start on a new drug called Cetuximab which is an antibody drug that helps block potential new cancer cells, as well as potentially helping the main chemotherapy drugs working. But this needed to be administered slowly for this first time, and they needed to check my blood first to be sure I would not react to it. All in all, this took about 2 hours to prepare for and another 2 hours to administer - after which I then had to go through my 2 hours of dreaded Oxalyplatin as well :(

I went in at 1pm, and didn't leave until just before 8pm, spending the last 2 hours in a fairly empty clinic feeling pretty sorry for myself; the Oxalyplatin felt cold, and I wrapped my jumper around my arm, but still it felt icy and painful. Outside, I realised I hadn't bought warm enough clothing, and held my arm to try and keep it as warm as possible whislt travelling home. Whilst the pain subsides after about 7 days, and is only really present when my arm gets a little cold or I use it in a certain way, I can still feel it's effects all the way through 3 weeks. Hence this Monday's injection went in the other arm - suspect we'll be swapping everytime.

As for which arm gets the Cetuximab in future, I don't know - this drug comes on a TWO weekly cycle, so I'll be heading back to the clinic a week from now for Cetux, two weeks for Oxy, three weeks for Cetux then in five weeks from now - both again. All in all, the 6 remaining trips to the clinic have become more like 12 more, which is depressing. That said, the Cetux infusions are probably not going to be as bad - they should only last around 1 hour in future, and the side effects are nowhere near as bad as Oxalyplatin so far. It has caused my face to redden, with a few spots starting to appear - I am on a monster load of Oxytetracyclene to try and stop me impersonating a 16-year old acne faced kid (again). It has also caused my eyelashes to grow, which was long overdue comic relief to this whole process !

Last cycle was probably a bit too "ah, it's fine", and might of given the impression that I'm going to soldier through this without anyone really noticing. The truth is, I am going to soldier through this, but it's going to get hard at times, and it's going to be a while until it's over. And I'm going to be a bit of a pain, demand extra attention, time and help where people can offer it, and probably keep talking about my horrid drugs, waving pill boxes in the air in anger and occasionally showing off my cool (and still very present) belly scar. And I thank everyone who listens, helps and has time for that, as it all helps me just do what I need to do, which is just keep going through this one day at a time. The hardest week of cycle #2 is over - in fact apart from the injection days, every day does get a bit easier than the last !

Next big date is 20th November, when I get some more scans done, and we see what the effect of all these drugs has been. Then we can start talking about how long the chemo will go on for and potential surgery options in the new year. Until then, I'll just keep taking the pills !

How does it make you feel?

Ok.
Just a little pinprick.
Therell be no more "aaaaaahhhhh!"
But you may feel a little sick.

Can you stand up?
I do believe its working. good.
Thatll keep you going for the show.
Come on its time to go.

[Pink Floyd - comfortably numb]

So I am coming to the end of my first 3 week cycle of chemotherapy (only 7 more to go !) Overall, I am relieved that the side effects did not overwhelm me, nor did I experience most of the more unpleasant or debilitating effects, such as vomiting, sore gums or numb hands / feet.

A lot of these are kept at bay somewhat by extra routines - I moisturise hands and feet daily now to combat drying out of the skin (as well as my scar, to try and reduce it) and use mouthwash at least twice a day (although they recommend four times). Not sure of the science here, but I think the chemo hits "newer" cells quite hard, so the front of the mouth has lots of saliva cells etc... that are quickly targetted and can become quite open to infection and ulcers.

The worst side effects peaked around 3-4 days into the treatment, and then subsided going into the second week. These were from the Oxyaliplatin, and consisted of this aversion to cold - which makes walking about outside in the cold quite unpleasant and draining unless rugged up really well. It also bought a horrible nausea, like having low-grade car or sea sickness in the background all day. The anti-nausea drugs probably kept this down a bit, and eating food made me feel somewhat better, although this tended to make me gobble down meals and then feel sick from that too. The advice of 5-6 smaller meals a day could be the one to follow here - I am trying to compile a list of snacky like food so the fridge and cupboard are well stocked for next week's new cycle - e-mails of recipie's for good snack meals are encouraged :)

I have also been working throughout the period, and possibly ended up working more hours than my body wanted to do (although the mind is still hungry for some challenges - think it's a bit bored of TV and computer games now !) The pills I take through much of each cycle cause fatigue, which is doubled in the earlier stages by the injection too. This often translates to a slower start to the day, sleeping in a lot more, and then even when I do go into work, I am hitting my wall around 3-4pm. So for next cycle I have proposed to take one day off a week - Wednesday would make sense - so that I don't overtire myself doing work and prevent myself having energy in the evenings to sort other things in life out - which with the ongoing tests and self-research into healthier living to help my recovery (more on this another post, I feel) are numerous indeed. I am also taking the week of the injection off as this quite physically tiring; after 3 days of work (~5-6 hours each day) I essentially slept through the whole weekend, which hinted I'd got the balance quite wrong. But it was also quite emotionally challenging, the constant nausea and very tender veins from the temporary damage this powerful drug does to them made me feel quite vulnerable and bought home what I had gone through and had yet to go through.

But like I say, overall this cycle has gone well, I've not missed a dose of drugs yet (hurrah to the Medi-memo !) and for next cycles I have some ideas set out:

* to keep fixed rest days from work to give myself some more energy outside of the office
* remove stress where necassary and relax more
* spend more time seeing friends - it's quite easy to become a hermit with lower physical energy levels, but time with friends is very emotionally lifting and just as important

All of which is nothing more than a subtle tack into a better bearing - I have been doing the above, but a little more of each should make the next cycle that bit more bearable still.

Pills 'n' Chills and Bellyaches

Every third Monday is now my treatment day, when I get to go receive another dose of Oxaliplatin, and pick up more pills for the coming weeks. Whilst comfortable in my fancy Kubrick-esque pseudo-2001 space odyssey environment (see previous post for photo), the actual injection leaves the vein quite tender, so with a somewhat tenuous nod to the the blog title, these days may not be "Happy Mondays". Although the tea and sandwiches are really quite nice, if I am to be totally honest, and the doctors are a smashingly nice bunch :)

My Pill regime following these appointments is set over 8 cycles, each of which is 3 weeks long. I get two anti-nausea drugs to take, as well as the core chemotherapy drug Capecitabine. In a fit of mathematics, I realised I need to take 4 of these chemotherapy pills every morning and night for the first 2 weeks of each of the 8 cycles - this is 896 pills in total ! To the left are the combined empty blister packs from just the first week's pill intake. A little over-dramatic, I'll grant you, but I quite liked the view of the aftermath from ejecting all these pills so wanted to share it with the general blog-o-sphere.

I've certainly never been a huge fan of chemicals in the body, and so taking all this medication has been quite a mental challenge for me. This purity of substance intake goes back to avoiding painkillers except when required by the worst headaches. And now it extends to working out which plastic bottles are killing me, as well as which of my favorite meat products cause Cancer too. There is a multitude of highly unhealthy food and drink products out there which are seen as perfectly normal, but seem to be a major contributor toward cancer, according to the experts.

But for now, I am obviously signed up for 6 months of Chemo's marvellous medicine, and with a new regime to adapt to, I suspect I will be reliant on a number of factors to help me along, not least of which are memory helping tools such as my new "Medi-memo", a box containing seven daily sections, each of which having dividers to spread pills across four different times of the day. Perfect for my current regime, I've even added a multi-vitamin onto each morning to bolster my iron levels (quite important I am told to avoid getting anaemic during the treatment), although I hope my diet is supplying much of my RDA for these things where possible. Certainly the large spinach curry for lunch today should have provided some good level of nutrition - it really is great that work have a "healthy eating" program in place at work, it makes getting nutritious lunches that much easier, giving me plenty of time to worry about all the other little things in life :)