Friday, October 24, 2008

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 !

Wednesday, October 15, 2008

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.

Monday, October 06, 2008

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 :)