The Food Problem

While I have been feeling a bit better, my appetite hasn't improved greatly. However on Saturday I actually ate 4 small slices of Brie and three seaweed crackers while sitting in the sun with friends. I couldn't eat anything that night, so just had a glass of Sustagen.

Yesterday I managed breakfast and a small cumquat and choc biscuit in the late morning, but couldn't face lunch. More Sustagen. By the evening I was feeling a bit more like coping with food, so I decided that I would like to try a recipe I had found in the newspaper - ricotta and potato hotcakes.

First problem was that the ricotta in the fridge was past use-by date (and in fact, definitely off) so I substituted cream cheese. Second problem was that the effort of grating and whisking etc made me extremely tired, so I had to have a little rest before doing the actual cooking. Third problem was that once the hotcakes were ready my appetite shut down abruptly. I forced myself to eat about three quarters of one - Kevin ate four.

This aversion to food is the biggest problem I am having with my treatment. I can put up with the sensitivity to cold induced by Oxaliplatin and the perpetual nose drip and snuffle I have had since chemo started. Even diarrhea and nausea are manageable problems as is hand-foot syndrome (which reoccurred two days before I finished this round of Xeloda) But I have always enjoyed my food (too much, in the past) and this present inability to eat is basically destroying the quality of life for me.

Enough whingeing. I must get the entry form off for possible inclusion of one of my textile pieces in a book to be published at the end of the year. I took the photos yesterday and had them printed as required. This morning I have burnt the images to CD, and now just need to complete the paperwork and send it off. Wish me luck.

A better day

I have been feeling much better today, possibly due to a really good (and long) night's sleep. I have not been able to fall asleep as readily as usual in the past few days, so it was really good that I fell asleep as soon as I went to bed at 10pm and slept soundly till 9 am. I haven't felt any need for a nap today, of course! No vomiting and only minor diarrhea.

My sister Dorothy used her respite time (a carer comes in to look after her husband Mick for four hours twice a week) to come and visit and we spent a lovely couple of hours sitting in the sun, knitting (crocheting in her case) and chatting. After she left I continued in the sun reading a detective novel that I found on my shelf which I hadn't read - oh dear. I am enjoying it.

I had some tomato soup at lunchtime - almost a normal serving - so I am really happy about that. I couldn't manage the croutons though. Kevin is cooking sausages with mashed potato, cabbage and gravy for tonight's meal. I quite like the thought of it, but will probably pass on the sausage. I'm very happy that I can actually contemplate eating at least some of it.

Only three more tablets (tonight's dose), then a six day chemo holiday. I am so grateful that I am feeling better. Don't know if the hypnotherapy has helped (though I have listened to one of his MP3 tapes a couple of times and tried to follow the suggestions).

Whatever, today has been better. I hope tomorrow will be too.

The visit to the hypnotherapist

I am not sure whether there will be useful results from the hypnotherapist. He certainly is a good listener and allowed me to vent about the crap I am experiencing at the moment. Then he got me to sit back in the chair, close my eyes and try to find a memory where I was happy, fulfilled and unstressed. I found this hard. He then talked at me for about 20 minutes, inviting me to think about good things, about being positive and banishing guilt, anger and anxiety. I cannot remember a lot of it, but he is going to send me a tape which we will load on my iPod so I can attempt to follow his suggestions.

When it was over, I did not feel that I had actually "gone under" and I had a tension headache. A friend has had hypnotherapy and she told me today that she is not conscious of her body at all while undergoing it. Not true for me, though I must admit I didn't feel any nausea or have stomach cramps or a need to go the toilet during the session. I will see how I go with the tape when I get it. No improvement in my appetite or eating ability today.

I went to my GP on Monday, and she was all in favour of trying the technique. She organised a Medicare service number which means that I can have a number of sessions and get back 40% of the fee from Medicare. Thanks, Deb! I am to see him again in a month's time.

Today I went to Secret Drawer, my friendship sewing/quilting group. I enjoyed myself a lot - particularly because Helen, the hostess, had a copy of the Victoria and Albert Museum's book about their exhibition - Quilts from 1700 to 2010 which was held earlier in the year. The book belonged to Helen's sister and was bought for her by her husband. What a man! It is a fabulous book and I would be tempted to buy in other circumstances. I was unable to eat any afternoon tea, though I tried , because it looked yummy.

When I got home there was a really crappy letter waiting for me. I may write about it tomorrow, or Kevin may in his blog, but it really upset me. However, after a call to the company involved, who have promised to deal with the individual concerned and offered me a apology, I am feeling a bit better. However, I am very tired so will go to bed early. I just need to eat some icecream so I can take my Xeloda. Two more days to go!

Hanging in there

just! The last three days have been pretty awful - I have been vomiting as soon as I get up, despite taking a Pramin. Couple that with diarrhea and the less said about the morning visit to the bathroom, the better.

I managed to get the quilt top finished and delivered it to the professional quilter on Friday morning, so that is one out of the way. I have three left to finish - one was almost done when I lost interest some years ago and really only needs 3-4 hours work. Another is all sandwiched and ready to go, while I plan to use my computer machine for the third one. I am hoping I will feel more energetic next week when I am off the Xeloda.

On Thursday I went and got a haircut. While my hair got really thin for a while, it has started to grow again, so I was looking a bit like Einstein - all wispy bits sticking out. Now it is all the same length and looks much better.

I have an appointment with a psychologist who also does hypnotherapy this coming Tuesday. I am hoping that he may be able to help with my complete aversion to food. I don't even need to smell or taste it at the moment - just the thought of eating makes me gag. Even my morning porridge and fruit is getting harder and harder to force down.

Only five more days before this round of Xeloda is done with, then a six day break before the next visit to the oncologist.

Not doing too well

I am having a really bad time with side effects this round. The tingling from the Oxaliplatin remains in my forearm as well as the usual finger tingling, I have constant diarrhea despite medication, I am cold all the time and I can't eat anything except porridge in the morning. The rest of the day I have smoothies and protein drinks. At least I am not vomiting!

Because I am not eating I am really tired and don't feel like doing much at all. I have spent most of the day sleeping and am feeling a bit better now, so I am going into my sewing room where I hope to finish off a quilt top that I started in 1996! Time it was off my hands. I plan to have it professionally quilted - I doubt I could cope with wrestling it through the machine.

Back on Chemo

We had a 10 am appointment with the oncologist and he reviewed the last week. He has looked at the scan and says the disease is still stable. The enlargement of the lung tumours is minute, and he is not worried about that. However, the CEA marker went up again to 4400 - twice what it was 2 weeks ago, so the Avastin alone is not doing enough to stop tumour activity. So I am back on the heavy stuff - Avastin, Xeloda and Oxaliplatin.

I start Xeloda tomorrow, but I had an infusion of the other two drugs with an early bad reaction to the Oxaliplatin. My hand hurt around the cannula and I had pain and pins and needles in my lower arm which extended up into my shoulder. Two hours now since the infusion stopped, but my arm is still bothering me and the mouth and finger tingling in response to cold is back to full strength. I'm glad I had icecream for lunch - guess it will be a while before I can eat it again.

I am not really looking forward to the next fortnight with Xeloda. Wish me luck and no side effects.

Vale Christopher Booth

Chris died peacefully yesterday. He had oesophagal cancer which spread to his bones. I have never met him because he lived in England, but I have been following his journey in his blog and I feel his death keenly. He and I were diagnosed within a day of each other and up to a month ago he seemed to be doing well. It is devastating to lose a fellow traveller, especially one so young. He was only 46. My deepest sympathy to Gillian, his wife.

A not so good day

We went to see the oncologist yesterday. The news was not the good I had hoped for. The report on the CT scan shows the liver tumours are stable, but at least one lung tumour has increased. Also my CEA is rising - 3000 now, up from 2200 a week ago. I am shattered - all the awful side effects I have been enduring seem to have been for nothing. I had an infusion of Avastin, but was told not to go back on the Xeloda.

The oncologist seems uncertain about what to do. I am to go back in a week's time, after he has had a look at the scan himself - he had only seen the report, not the actual images.

A little brightness - I have had two reasonable meals today. Food still does not taste good, but I am able to take in more than I have been able to for the past few weeks.

A good day

I am still not able to eat much, but I had a big bowl of fruit, yoghurt and full cream milk, topped with a spoonful of cereal and some cream for breakfast. I ate all of it except the cereal! Then for lunch I had some stewed apple and icecream. Ate all of that too. Tonight I intend to have another bowl of the vegetable soup I made and ate last night.

I have had a lovely day. This morning, after having my blood test in preparation for tomorrow's visit to the oncologist, I went with a friend to an art exhibition. We were too early, so we went to another gallery and enjoyed what we saw there, then came back to our intended destination. It was great. Read more on my other blog if you are interested.

This afternoon we went to visit Margaret. She seems to be holding up well after Haddon's death a few weeks ago. Then we went down to South Beach and had a little walk in the park there. It was a lovely day, warm and sunny, and a pleasant stroll. I am pretty tired now, though.

The CT Scan

I managed to mess up my appointment time - I thought it was 10.45 am when it was actually supposed to be 9.45. Fortunately they were able to slot me in as the last patient for the morning. I don't know how it happened - blame it on chemo brain that I didn't actually check the time on my appointment letter.

By the time the scan was finished they were delivering lunch to surrounding wards and it smelled so good! What a thing to say about hospital food! It smelled like savoury mince with peas and other vegetables and I thought about it all the way home. I decided a meat pie would be good, so I stopped off and bought two at a deli. Got them home and reheated, only to discover that I couldn't eat more than two fork fulls, despite a liberal dose of tomato sauce. However, it didn't go to waste - Kevin finished it off after his own pie. I had a glass of Sustagen.

Now we wait until Friday to find out what the scan showed. Please let it be good news.

Still not eating

I went to the GP this morning to get my regular prescriptions rewritten. She was also concerned about my weight loss, though she didn't have any suggestions on coping with inability to eat that I haven't already tried. She did say that eating what I could, when I could, was the best that I could do at the moment.

She took my blood pressure and it was quite low, so she has taken me off one medication and wants to evaluate the other in three weeks or so. She also did a blood sugar test and it is a bit high. Now I could have diabetes to worry about as well!

I am to have my CT scan tomorrow morning at 10.45 am, and I am not allowed to have anything but water for six hours prior, so my usual calorie loading won't happen tomorrow morning. I just hope I will be able to eat afterwards to make up for it. Plus, of course, I am hoping for some good results to justify the struggle I am having with chemo's side effects.