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 ;)
Monday, September 29, 2008
Thursday, September 04, 2008
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.
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.
Tuesday, September 02, 2008
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.
(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.
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