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 :)

Rested and starting the road to recovery

Ten days in Portugal amongst my family, including my two little nieces, was spent profitably reading some books, relaxing and eating seafood. After this, I feel much better and ready to begin my chemotherapy course. Some preliminary meetings and a PET scan later revealed little new information, other than to the best of medical knowledge right now, we must assume the liver spots are secondaries, even though they are not textbook examples. Some more information came back on the tumor as well, and it appears to be genetic in origin, more blood scans will confirm a little more going forward.

This began today, with a four hour long trip to the treatment suite at the London Oncology Clinic (LOC). This space age center has a dozen booths all decked out in white, and electrical adjusting big comfy chairs. During the hours, they injected a large dose of something called Oxyplatin, whilst explaining all the side effects I might feel (nausea, vomiting, tiredness, aching feet and hands plus a sensitivity to the cold). I also got a large stack of drugs to take over the next three weeks, including tablets of the 5FU-based main chemotheraphy drug, called capecitabin, who's side effects include nausea, vomiting, tiredness, aching hands and feet and hold on, it sounds just like the other one. They also bought me all the tea, coffee, water and sandwiches I wanted - awesome.

Actually, there are a few differences, and I was given a large number of other supporting durgs to help control any expected and not-as-expected side effects. The staff were very friendly, and I really felt I understood what was due to happen over the next few weeks. They discussed 8 "cycles" of three weeks each - which I realised meant the seventh cycle would begin on my birthday ! - but then again I think there is a solid probability of further liver surgery interupting things halfway through, once we have had more scans and seen what effect the chemotheraphy have had on the cancer secondaries on the liver.

Still coming at this from a positive viewpoint - I have no adverse reaction to the oxyplatin today other than a slight prickling from cold wind coming through my jumper and an odd reaction to eating cucumber from the fridge - packed full of slightly cold water, it was a little bit like my tounge being burnt - ouch. But I take it as more positive news that my body coped with the initial dose well. Other than that, I need to do some ongoing blood tests to monitor white blood cell counts, keep away from prolonged access to infectious people, and just listen to my body - rest when it's tired and report any side effects felt to the LOC team, who can tweak doses of the drugs to manage and reduce them as much as possible. I might even manage to fit a bit of work back into all of that - back into the office on Wednesday and seeing how things go.

Thanks to all who have offered best wishes and kind words during my reappearances in social society ! I really don't mind talking about it, even at "fun" situations, because for me talking about it and acknowledging everything that's happening is a superb way of avoiding falling into a "denial" situation, where I just try and put my head down and ignore everything, which as a long term strategy could be an emotional disaster. Equally don't feel obliged to hide any sad feelings from me - I don't have the monopoly on being upset about this - and sharing sadness is also another way this situation becomes more real and manageable. Naturally I am trying to keep positive, but some sadness and venting of emotions is an essential part of that.

Right, off to put all my new pills in my fancy new pill holder (yey ! Toys !) - look forward to seeing people soon, but you may just need to allow a couple more rainchecks here and there. I'll be sure to let you know though - don't withold any invites on MY account ;)

Scans and the liver

I saw my Oncologist (cancer specialist) today for an update on treatment going forward. So far no-one has been able to determine exactly what was on my liver, but the evidence points strongly towards cancer secondaries, and I expect my liver specialist / surgeon to confirm that in the next week. I am also down to have a PET scan to add to the MRI and CT scan and to confirm the spots on my liver are behaving like cancerous cells. The tumor had perforated the wall of the bowel, so I guess some cells may have spread that way. The 31 lymph nodes they removed with the section of the bowel all tested negative for spread however, which is good news - it means the tumor is graded as Stage II (or Dukes B).

In any case, I am due to start chemotherapy toward the end of the month, which will involve tablets and some intravenous drips. The exact composition of what they intend to give me will depend on some further tests of my genes (something called the K-ras gene, to be exact) and will be made much clearer in a few weeks. This should discourage any regrowth in the bowel, and hopefully help with whatever is going on with the liver too. Side-effects should NOT include hair loss, but might be some tiredness and sore hands / feet. Oh, and probably some of my old companion, diarrhoea, as well. All quite acceptable for the benefits it will bring me, I think.

Then, after 3 months, it will be time for more liver scans to check if there has been any change. At this stage, on the assumption that nothing has improved, I think there is a reasonable chance I may need to go for liver surgery to have the small sections removed. Liver surgery has come on leaps and bounds in the last 10 years, and the overall prognosis for this operation is not dissimilar to the bowel operation I had. Plus the liver is super-regenerative, so should heal easily. After a recovery period, I'd expect another 3 months chemotherapy.

So some quite tough roads ahead, but one step at a time and it should all be manageable. My key philosophies are that I am not my illness, and life is not getting put on hold for a year (or more) because of this - although it may come down a notch or two for a little while ! The specialist indicated some people do not return to work for the duration of this treatment, but I think that would stand against this main objective of getting back into life properly. There will still be frequent clinic appointments and tests going on in the background too, so whilst other plans should still go ahead, much of my time will very much be in the hands of doctors for the next year.

As always, armed with this information I am keeping a positive head on it all. It is all a bit scary, but I have had some good news with the lymph nodes being clean and the surgery so far has healed very well - only 2 weeks after the operation and I am up and about to a very favorable degree. I walked for almost 30 minutes today, cooked a big meal this evening, and my muscles don't hurt too much as a result. Still have a few back pains when the various muscles there are overworked (compensating for the weak tummy muscles) but hopefully that will improve in the coming weeks. Looking forward to heading out for some sun and relaxation at my folks place in Portugal in the next week. There both Mimi and I can relax a bit more, and get my head away from London for a while, and into a few good books.

Reducing my iron levels

Today is staple removing day - finally the metal clips that have held my belly in check are leaving. Probably about time too, as it seems that my body is trying to get rid of them anyway - my dreams of being a cyborg have been cruelly shattered as it seems the bosy is smart enough to spot lumps of metal and tries to grow them out.

(one staple-removing appointment later...)

Ok, that was almost painless; just a little nip as the ends came out. And bless Mimi's thorough nature for spotting that one was still in my belly button when the nurse said she was finished ! My wound is pretty much closed and healed now, and once the red dots which marked the staples have gone, it'll just be a big, long belly scar for me. Mimi is looking at ungents, potions and spells to try and reduce the scar, but I think retaining some evidence of stomach surgery will be useful for breaking the ice at cocktail parties.

Walking and busing down to the surgery was fine. Pretty much most everyday movements are now, just restricted on how far (and fast) I can walk and no heavy lifting. But able to help out around the house a little more, as long as there isn't too much bending over which hurts the tummy after a while. Hopefully enough to relieve my poor stressed out nurse Mimi ! Hopefully good enough to make our flights out to Portugal manageable next week - sometime in a hot country with my parents and a pile of books will do us both the world of good right now.

I am told a liver specialist will be taking another look at the results and presenting his findings in a meeting today. Not sure when I get to hear about it, but suspect I find out on Thursday when I see my Oncologist (cancer specialist) who should hopefully let me know what's in store for the next few months. Bit scared, but then again answers are usually much more reassuring than open questions, so looking forward to getting some more of those.