Living in Luxury …. In a Hospital?

Well, if it didn’t have a hospital bed and all the associated medical technology, my room could well be in a resort in Bali. HUGE bathroom, a fridge (for which, unfortunately, I have no use), a private balcony and an assortment of chairs for visitors, including a recliner. This, by the way, is not the usual room – I just got lucky!

When I was admitted I was in a standard single room in a general ward because the oncology ward was full. That was very pleasant but when I was moved to oncology the first room I was given definitely was not. There had been an accident a couple of days before with a colostomy bag and despite the carpet having been scrubbed four times, the room STANK! Despite my usual reluctance to cause waves, I couldn’t stand it – I felt sick for the first time in days. They attempted to disguise the smell by burning some essential oil of lavender in a burner. Better, until it was so strong it almost smelt worse than the previous/still present odour. The next morning I was moved to this room, and the carpet in the previous one was pulled up and removed. One of the nurses thanked me. She said that while they had complained, maintenance said that cleaning would be sufficient, while they knew it was not. So I felt relieved that I had helped others not to have to put up with a problem.

Today is Friday, the eighth day I have been here in hospital. I have had four different cannula insertions, each of which eventually failed because the veins collapsed due to the dehydration. I have been drinking litres of various liquids, but have had no solid food since last Thursday. I stopped vomiting after two days, but have continued to have bad diarrhea, which of course negates the liquid I am swallowing and having infused. I had an X-Ray which confirmed that I had a bowel infection (it was almost impossible to get a stool sample of course). I had a CT scan on Tuesday, and late Wednesday I got another PICC line inserted because of the problems with my veins. I didn’t want this – I had hated the previous line – but there was no choice, not only because of the collapsing veins, but because I could not tolerate the potassium mixture that I need being infused directly. It was awful – like fire in all the veins of my arm.

So this is the update. As you can tell, I am feeling much better. I am concentrating on doing as much as I can to get rid of the diarrhea and bowel infection so I can go home. And the CT scan results? Not good – the tumours in my liver are worsening. We will have some heavy decisions to make soon.

Struggling

Don't read this post if you are put off by sordid details!

It is difficult to be positive when you feel so horrible. I have had dreadful diarrhea for the last few days, plus I am throwing up without warning. No feelings of nausea, just a sudden upchuck. Last night I threw up immediately I had finished my meal (strawberries and icecream) and swallowed my first Xeloda. I waited a bit, then took the three tablets. Kept them down, then had a nasty accident from the other end when I got up to go to bed. Cleaned that up, took a Gastrostop, then threw up again. It was more than an hour since the Xeloda, so that should have dissolved.

I am sleeping lots, so I should start feeling better soon, I hope. However, the foot-hand syndrome has started again - much earlier this cycle than in the past. Lots of cream on my feet seems to be helping.

Cycle 5 Xeloda

There was a bit of good news yesterday - the CEA marker has dropped from 4400 to 3500. So I had my infusion of Oxaliplatin and Avastin and started the Xeloda again this morning.

I am having a bad time with the Oxaliplatin side effects. I have pins and needles in both my hands and up my right arm (which was the one the cannula was in) plus in the calves of both legs. These are bearable, but I am also having difficulty swallowing any liquid at all that is not at least body temperature. Any colder and my throat closes up and I find it difficult to breathe. Scary! Also a bit of a problem when it comes to trying to replenish fluids - I still have diarrhea. Have had several cups of tea - can't take warm water unflavoured. Nose drip is worse than usual, too.

I had appointments today for some more Bowen therapy for my shoulder and for another hypnotherapy session. I cancelled the Bowen therapy one because I felt so unwell, and then the hypnotherapist rang and cancelled his session. Can't say I was sorry about that.

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.