Friday, April 30, 2010

It's gone

The PICC line, that is. Plus the portable pump. The line came out very smoothly and I am wearing a pressure bandage which I can take off in an hour or so and a dressing which I can remove tomorrow. Then I can shower without a plastic sleeve and even go swimming. I think I will take my bathers with me to Queensland next week!

Here is a pic of me connected to the pump through the PICC line.

I am very glad the line has gone. It has left me with blood blisters where the dressing was, but that should clear up quickly. The other benefit of changing the drugs is that I will now have only one chemo appointment every three weeks instead of three every two weeks. They gave me an information pack about Xeloda today - it's huge! I will have to tackle it over the weekend.

Wednesday, April 28, 2010

Cycle 9 Day 1

Today was the last time I will be having Oxaliplatin, and I am really relieved. The tingling kicked in about 10 minutes into the infusion and is still there. Not quite painful unless I touch something cold, but not comfortable. Plus my lower legs are more tingly than previously.

I had some good news from the oncologist. My liver function is not quite normal, but not a cause for concern. The CEA marker has dropped to 500 from 1100 a fortnight ago. Yay!

I will have a three week holiday break from chemo. When I resume on May 19th I will be having an infusion of Avastin and will be taking Xeloda orally every three weeks. Apparently the side effects to be expected are much the same, except for the tingling and cold sensitivity caused by Oxaliplatin. So nausea, diarrhea, etc are still to be coped with. This regime will be for another 6 months.

Not so good news. The effects of the nerve damage caused by Oxaliplatin will probably take 6 months to resolve. Plus the interdisciplinary committee has decided that surgery for my bowel cancer is not an option at this time. The reason - the numerous metastatic liver tumours are the most serious part of my condition and can only be attacked by chemotherapy. If I were to have surgery, chemo would have to be suspended for 6 to 8 weeks, which could result in a worsening of the liver tumours. I am a bit disappointed - I would have liked to have gotten rid of the primary - but I can see the logic of the decision.

The pump is pushing flouracillin in at the moment. When I get it removed on Friday, the PICC line will also come out. I can hardly wait.

Tuesday, April 27, 2010

A good book

I paid a visit to the podiatrist today to have a painful callous on my left sole dealt with.

The podiatrist doesn't have magazines in his waiting room. Instead he has quirky art books. On previous visits I have enjoyed looking at pictures of shoes and handbags. Today I was delighted to find a copy of Cake Wrecks. This is by the author of one of the blogs I have on my Gooogle Reader and I enjoy seeing what appalling examples of professional cake decorating she can come up with. The book has examples I had not seen before. The blog is definitely worth a visit.

I start Cycle 9 tomorrow, the last one with Folfox6.

Monday, April 26, 2010

Questions for Cycle 9

I will have my fortnightly blood test tomorrow, then see the oncologist on Wednesday. I am quite eager for this appointment, because I have a lot of questions to ask. I already know that the chemo regimen will be different after this cycle - I want more detail about exactly how, and also what I may expect in the way of side effects.

I have been very tired these last few days ("SURPRISED? "says Kevin. "You have been doing as much as you did before the cancer diagnosis".) He's right, of course. Scratch tiredness as a side effect. The diarrhea has been a bit worse this cycle and I have had some pain in the lower abdomen, but not enough to warrant pain killers. The finger tingling is still a problem and so is the clumsiness when I am using my hands, especially in tasks that are not habitual. The skin on my feet and toes is darkening and my hair is thinning. Can I expect more of the same? or something different?

I also want to know the result of the consultation he had last week with the surgeon. Is bowel surgery an option?

Sunday, April 25, 2010

Another day out

My sister and I went to a Craft Fair this afternoon. I bought some pickles (an African Mango Pickle) from Armanda whose Eggplant Kasaundi is absolutely fabulous. I usually buy that, but I had a full jar at home. I also bought a pack of the ingredients for a yummy vegetarian dahl and some passionfruit butter. I could actually taste what I was sampling which was great.

I quickly ran out of energy, despite sitting for half an hour listening to a talk and demonstration on recycling op shop finds into fashionable garments, so we left after two hours, and I have done nothing since I got home except surf the net.

I had an encounter with an acquaintance which was rather disconcerting and I am not sure I handled it well.

"I hear you have been sick" she said.
"Yes, I have cancer".
" Breast cancer?
" No, bowel cancer and it's spread to my liver. I am having chemotherapy".
" Well, I guess that's all they can do for it. You just keep positive".
"Thanks", I said.

So why is the conversation nagging at me? Possibly the assumption that the only cancer a woman will have will be breast cancer. Possibly the assumption that nothing will be able to be done for me. Possibly the throwaway line about remaining "positive". What if I sometimes want to be negative? Especially when I am having a (literally) shitty day. Positive is a meaningless word in connection with cancer. Stubborn is one I like better.

Saturday, April 24, 2010

Another full day

I went to a journal making workshop at the Embroiderers' Guild today. It was five hours, so I had very little energy by the end, but I thoroughly enjoyed it and am pleased with what I managed to accomplish. More details on the other blog.

One of the members there today has a husband who was diagnosed with lung cancer just about the same time as my own diagnosis. Mike has finished his chemo and is now waiting for another CT scan to determine further treatment, but there has been considerable shrinkage in his tumours. Good onya, Mike!

On the advice of a friend who is a herbalist, and with the permission of his dietician, he has been drinking a tea made from Herb Robert every morning for the last month or so. While he doesn't know if it has been efficacious, he thinks it can't hurt. I was offered a package of the dried herb to try, which I accepted.

I googled the herb and found that there is considerable information related to its use for cancer prevention and treatment. I am sure that some of the claims made are not true, but if it is not harmful it may possibly be of some help. I am going to check with the oncologist and the clinic nurses on Wednesday, but I will try the tea until then. If it helps, I want it. If it doesn't, I will stop. There is no way I would ever use it instead of conventional medicine, but it may be useful as an adjunct.

Friday, April 23, 2010

Tired, but pleased with the day

I have done lots today. I went shopping this morning and bought some things for the house at Kitchen Warehouse and Spotlight, as well as doing the usual grocery shopping. Because I went to a supermarket that I don't usually patronise I found myself retracing my steps often so I got a bit of a workout that way, which has probably contributed to my tiredness. I have also been doing some playing with textiles today - details on the other blog.

The pad worked well last night, though the diarrhea was less intense than the night before. It was bad in the morning so I took a GastroStop. It has worked. I hope my energy level will be OK in the morning - I am planning to participate in an all day workshop on book making. I am looking forward to it.

Thursday, April 22, 2010

Mid-Cycle 8

I have very little to say about this cycle - it is so much like the last one. Bad tingling in the fingers, no taste and yucky night-time diarrhea on the seventh day. I am trying an incontinence pad tonight - I had an extremely disturbed night last night and a lot of washing to do this morning!

I am very tired. I had the PICC line dressed and flushed today - hopefully for the last time. It was a long wait again - over an hour and then less than 20 minutes to have it done. Then we went to see our financial advisor. Our finances are in good shape, but of course my health situation will affect the focus of our future investments.

I tried a new recipe tonight - Indian vegetable cutlets. They were a total failure - the patties fell to pieces and they were tasteless. (Kevin says - not true, they tasted great). Maybe I should give up cooking while my taste is affected, but I really enjoy looking for new recipes and trying them out.

Sunday, April 18, 2010

More hand problems

My hands are causing me some concern. The cold induced tingling has developed into actual pain, which fortunately does not last all that long. More of a problem is the lack of sensation. While I can feel things with my finger tips, they are not at all sensitive to heat. I have managed to burn my fingers quite badly while cooking. Plus I managed to stab myself with a quickunpic while sewing. I MUST be more careful.

I am otherwise reasonably well - it is the usual slide down in the first week after chemo and the steroids that are administered with the weedkillers. I have no appetite and can't taste anything but sweet things. Today is Day 5, so I should start feeling a bit better in a couple of days.

Thursday, April 15, 2010


I have written about this on the other blog, so feel free to skip this post.

The Oxyplatin side effects are cumulative, so the finger tingling is getting worse. The tingling has now extended to my lower legs and today for the first time I felt it in my toes. It is the hands that are most affected. Today it was so bad that I had to wear gloves for about an hour after I got up, and even after I discarded them I could feel that my hands were not functioning all that well.

I certainly proved that. I was cutting fabric for today's planned project when I cut more than I intended. I took a slice with the scissors out of my left forefinger. It has been very slow to clot - probably because of the Clexane I am injecting daily to help deal with the embolisms in my lungs.

I have changed the dressing on the wound twice today, but it is still seeping. I have not done any more on the project - I don't want a bloodstained result.

Wednesday, April 14, 2010

Cycle 8 and a twin

Today was the eighth time I have had the weedkillers pumped into my body. The procedure is quite boring - 4 hours sitting in a chair. You can watch television, and tea, coffee and sandwiches are on offer. I usually read while listening to music on my iTouch (a Christmas present), but today I took along my knitting as well.

It aroused quite a bit of interest with the nurses. Another patient saw it and sent his wife along to find out about it, since she was also a crafty person. We had a pleasant chat.

Then I discovered a twin, sitting diagonally opposite. As the various bags are connected to the pump, the nurses work in pairs to check that the correct poison is being administered to the correct patient as per the details on one's armband. They read out name and date of birth. The guy diagonally opposite and I share the same birthday (April 2) but not the same birth year - I am 12 years older than he is. He heard the date and came over later to chat.

His last two birthdays have not been wonderful. Last year he was diagnosed with bladder cancer the day before his birthday. He had surgery, and was given the all clear. This year, again the day before his (our) birthday, a CT scan showed lung mets. They are inoperable and chemo is the only treatment, but it doesn't appear his oncologist is very hopeful for success. His prognosis is a year, though if the chemo he started today doesn't work, they will try the stuff I am having, which is for bowel cancer. I wish him well.

Today the reaction to the Oxyplatin kicked in almost immediately with severe tingling in the fingers and lower legs. It usually waits till the next day. This is apparently an indication that the nerves are becoming more and more damaged.

The oncologist confirmed today that the next cycle will be the last with FOLFOX6 - so no more Oxyplatin after that. And a bit of good news - my CEA has dropped to 1000 so it seems the cancers are quieting down a bit.

Monday, April 12, 2010

A good day

Today was day 12 of the cycle and apart from the ever present finger tingle (can you believe it kicked in when I tried to hang some washing on the line!) and a crampy feeling in the lower abdomen (probably related to the diarrhea which is still in evidence) I woke up feeling good. So I had a textile day (details on the other blog).

I also went shopping at an Indian supermarket near the sewing machine shop. I have noticed it before, but somehow never made the effort to visit. My favourite TV show of the moment is Poh's Kitchen (for Chris - this is an offshoot of a show called Master Chef which was a huge success in Oz last year. Poh is an artist who came here as a small child from Malaysia. She was the runner up in the competition and now has a weekly cooking show on ABC - the national broadcaster). Last week's episode featured recipes for Indian food (have I mentioned that I really like curries and other spicy food?) which was light on the chillies which I can no longer tolerate.

So I went shopping for a couple of ingredients which were new to me and not in my pantry. I bought black cardamons (I already had green ones) and keora water which is flavoured with pandan - a bit like rose water. Both are required for one of the recipes I want to try. I also bought a spice mix for butter chicken on the recommendation of a young Indian shopper who noticed me scanning the shelves. Using these ingredients may happen tomorrow if I feel well and still have some taste. If not, they can wait awhile.

I will have my blood test tomorrow and Cycle 8 starts on Wednesday.

Saturday, April 10, 2010

Feeling a bit better

despite rather nasty diarrhea last night. Though the finger tingling is still intense I have regained some taste and I really enjoyed the roasted tomato and vegetable soup I made for tonight's meal.

I have attended two meetings of textile groups I belong to - one on Friday and the other today. I couldn't quite last the full distance for either, but I came home less than totally exhausted on both days.

I hope the usual pattern results this cycle and I will now have a couple of days of feeling good before the next cycle starts on Wednesday.

Wednesday, April 7, 2010

Mid-Cycle 7

I am not enjoying this cycle at all. The tingling in my hands is not getting any better, nor is the tingling in my mouth and lips. I cannot taste anything except sweet things, which I am trying not to eat. I have felt nauseous and have had quite a bit of diarrhea. It looks like the Oxyplatin has affected my nails - the nail beds are darkening. Ugh!

Enough whingeing! I had the PICC line flushed and dressed today. If all goes as anticipated this will be the second last time I have to have it done - I can't wait. It was a long wait though - over an hour, which doesn't usually happen. Just as well I parked in the carpark so I got free parking.

I have an appointment with my GP tomorrow - the oncologist has asked me to get a referral. Apparently the one he gets from the surgeon is only for three months, whereas one from a GP lasts a year. I realised the GP will probably suggest a flu jab since it is that time of the year, so I called the oncologist to find out if I could have it. I can, so I will. I don't think flu is a good thing to suffer from this particular year.

Sunday, April 4, 2010

A Day Out

We are having quite a busy weekend. Yesterday we drove to York which was the first inland town in Western Australia and has some lovely old buildings. There is a very English feeling to siome of them.

While we were there we went to a photographic exhibition and an Antique and Collector's Fair. I bought a couple of things at the Fair for very reasonable prices - including an set of eight old EPNS dessert spoons and forks for the huge sum of $28. Most of the exhibits in the photographic exhibition were quite ordinary, but there were some photos of textures (wall surfaces and leaves) that I liked and some Photoshopped images which I found quite interesting as I tried to work out what the artist had done. Nothing terribly technical, mostly colour inversion and some filters.

York is 98 km from Perth and I began to feel nauseous on the trip home. I had some Pramin with me, so I took one and lasted the trip without having to pull over to the side of the road. I felt rather unwell for the rest of the evening, but have had a good night's sleep and feel OK today, apart from BAD tingling in my fingers and in my lower legs.

We are going out to lunch at our daughter's today.

Friday, April 2, 2010

It's my birthday

and it has been very pleasant. We were taken out for lunch (see the other blog for details if interested) and I had my pump disconnected in the late afternoon.

I am always pleased to see the last of it - it is quite heavy to wear and showering with it involves putting it in a plastic bag on the floor outside the shower. Even though it has a long line, it still means I have to be careful and restrict my movements so I don't pull the cannula. I also have a bit of a problem sleeping with it - I toss and turn and end up with the line wound around my body.

I only have to put up with it for two more cycles, hooray! I will be really happy to be rid of the PICC line too.

The anti-nausea drugs continue to work well, but the tingling in my mouth and fingers is quite bad this cycle. It is certainly interfering with my enjoyment of a celebratory Moet. I have also had tingles in my feet and lower legs today, which has never happened before. I believe I will no longer be getting Oxyplatin when I start the new regime in May. It certainly seems to be the drug that gives me the worse side effects.