Wednesday, March 31, 2010

A bit like the curate's egg

Today was good in spots.

There was good news from the CT scan. The liver tumours are shrinking. One which was 2.6 cm in January is now 2 cm and another is now 1.4 cm (it was 1.8 cm). To quote the report "similar reduction in size is seen in a number of lesions within the liver and no new deposits identified". YAY! The lung nodules are unchanged since the last scan, and the oncologist says that this may very well indicate that they are not tumours. I am very hopeful that this is the case.

The tumour indicator from the last blood test on Tuesday showed another reduction. Last cycle it had jumped to 1700, now it is 1100. Still a long way to go, though.

I am to have two more cycles of FOLFOX 6 using the PICC line, which will take me to the end of April. Then the line is going to be removed and I am to have Avastin every three weeks and Flouracillin in tablet form. The Oxyplatin will be suspended for a while since I am having such a strong reaction to it. This means that we do not have to worry about getting the PICC line dressed while we are in Queensland in May. I will be glad to see the end of it - it is both unsightly and uncomfortable as the dressing over it irritates my skin.

The oncologist is also going to confer with the colonorectal surgeon regarding possible removal of the primary cancer in my bowel, but we won't know any more about this till the end of April.

And today's not so good part? While I was booked in at 2.30 pm for the chemo, I didn't get into the chair till 3.45 and the actual infusion did not not start till 4.30. We left the hospital just before 8. So I will still be wearing the pump when we go out to lunch on Friday with sister and brother in law to celebrate my birthday .

Tuesday, March 30, 2010

Last day - new cycle tomorrow

I went to have my blood test this morning. It was not a long wait, but I used up most of the parking time I paid for. I hope all is well with my white blood cells - I am due to start cycle 7 tomorrow.

The results of the CT scan I had on Thursday should be with the oncologist by now, so I am hoping that there will be good news about tumour shrinkage to report tomorrow.

While I am still suffering from tingling fingers when I touch cold stuff, my tongue is not quite as sensitive as it was earlier in the cycle and I can taste a bit better. Still hurts with spices though, so curries are off the menu for the foreseeable future. However, I did enjoy a hot cross bun for morning tea today. I know the lack of taste will be back tomorrow.

Sunday, March 28, 2010

A family gathering

Son Martin turned 39 on Friday (where did all those years go?) so we had a barbecue lunch today to mark the occasion. Daughter and partner (and their puppy) and us were present.

Martin does not socialise well as a rule. He was a drug addict for 20 years and still suffers from depression (and, I think, bipolar disorder). However today went well.

I prepared some pork fillets cut into chunks, marinated in orange juice and mustard, threaded on skewers and accompanied by a slaw of red cabbage, Granny Smith apple, carrot and green onion with a sour cream and mustard dressing. Then there were prawns which had been marinated in lime and chilli, Italian sausages, a green salad and some fresh olive bread. The food was a dead loss as far as I was concerned - could have been cottonwool or cardboard, but everyone else seemed to enjoy it. I still enjoy cooking, but can see the time approaching when I won't feel like doing it if I can't enjoy it.

However, the day was a success so far as family interaction was concerned and I am pleased about that.

Friday, March 26, 2010

A Shitty Day

Literally. The diarrhea started in the middle of the night and continued to mid afternoon when the Gastro-Stop finally worked. I have Googled and diarrhea caused by the contrast solution can be a problem after a CT scan, though it has not affected me with the previous 3 scans.

I am still really tired, plus I am having problems with my mouth - fortunately no ulcers, but bad tingling. Food tastes like cottonwool today as well. Hope tomorrow is better.

Thursday, March 25, 2010


I got up early and drove to the hospital before 8 am to have my PICC line dressed. The traffic was appalling - an average of 25kph for the major part of the journey. The drive home was a breeze.

I had to fast for four hours before my CT scan which was scheduled for 1.15 pm. I find that if I don't eat regularly I start to feel nauseous, and this happened today. Fortunately I wasn't sick, though by the time they finished with me it was after 3 pm. I bought a tuna patty at the hospital canteen - disgusting! It was dried out and of course tasteless for me. Kevin had dropped me off at RPH and after the scan I caught the train back to Perth and then to Fremantle where he picked me up.

I am now exhausted. Fortunately I cooked some braised beef and mushrooms the day before yesterday, so I don't have to worry about dinner tonight.

Tuesday, March 23, 2010

A Shopping Spree

I returned 2 books to the library today, so decided to look for some new leather gloves at Garden City since the department stores are in full winter stock mode despite the temperature today being in the high 20s and uncomfortably humid after the storm last night. At least we got some rain - the first since November last year.

I believe I am going to need the gloves when it gets cold - I suffer from Reynaud's Syndrome anyway and the Oxyplatin is also affecting my fingers. I wanted fine leather without a lining for maximum flexibility.

Gloves found and bought, I bought some night cream, then decided to look in a kitchen ware store for a small saucepan to use on our new induction cooktop. I have had to discard one which I used lots. I found one, then noticed there was a special on a pressure cooker - almost half price. My old pressure cooker is aluminium and therefore unuseable on the new top. I like to use a pressure cooker for soups in winter, so that was added to the purchases. Then I used a book voucher I was given for Christmas. I haven't bought so much at once for ages! I must confess that it rather fatigued me too.

My mid-treatment CT scan is on Thursday and my next chemo is scheduled for next Wednesday. I am hoping for a good report.

Monday, March 22, 2010

An excursion

I haven't had anything much to write about for the last few days. This cycle is following the pattern I have become accustomed to, with tiredness starting to peak as I approach mid-cycle. I am not nauseous or suffering from diarrhea. I get hungry, but I can't eat much because I can't taste much either and the tingling in my mouth is unpleasant if the food is cold. The fingers still tingle badly when I touch cold things, though I have learned to use a cloth or oven holder to get stuff from the fridge, and there have been no droppings or breakages lately.

We did a big excursion on Saturday in the late afternoon to the annual Sculpture by the Sea at Cottesloe Beach. There are lots of pictures on my other blog. It was crowded, but you could usually get a photo of a sculpture without extraneous bodies. I did include one in this: it was great to see the interaction.

We were there for more than two hours, walking up and down stairs and paths . Despite our best efforts we did not see everything, as we discovered when we looked at the catalogue later. I thoroughly enjoyed the outing.

Afterwards we went to Fremantle Fishing Boat Harbour where we shared a fisherman's basket at one of the fish and chip places. The seafood component was very nice - the chips were horrible. I was a bit wobbly as we crossed the railway line to get back to the car, so it was an early night for me.

Yesterday we had visitors for lunch and I made a fish pie (snapper, prawns and scallops in a herbed marscapone and sour cream sauce with a cheesy potato topping). Everyone else liked it - I couldn't taste it and only ate half my portion though I finished it later in the evening. Dinner was leftovers. Kevin ate some of the Chili con Carne he made the other day. I cannot eat it - chili really hurts my mouth these days. Bummer - I love spicy food.

Wednesday, March 17, 2010

Cycle 6 on St Patrick's Day

Half way through. I had the 6th chemo infusion today - here is a pic of the line being dressed, prior to the pump connection. It is a most unflattering photo of me.

The nurse is Irish and today is Paddy's Day. Note the temporary tattoo. At least she wasn't wearing a headband with nodding shamrocks, though one of the nurses was.

I am feeling pretty good, though the blood test news wasn't all that wonderful. The tumour marker increased from 1300 to 1700. The oncologist said that wasn't significant as it often fluctuates, but I can't help feeling disappointed. However, since I had a reduced dose last time, maybe that was a factor. The referral for the CT scan was made - now waiting for an appointment time. It will be done at Royal Perth (public hospital) since it is related to the clinical trial I am involved in.

Monday, March 15, 2010

Four Months

It is exactly four months today since I was diagnosed with metastatic liver cancer and began the journey of treatment to attempt to contain it.

I cannot believe how the time has passed. Of course, the regularity of medical appointments of various kinds has assisted. When every fortnight has four regular demands: blood test one day, oncologist meeting and four hours of chemo the next, pump removal two days later, PICC flush and dressing seven days after that, it does tend to make the time pass quite quickly. Then it all starts again.

I have been rather mimsy the last two days. Mimsy is a word our family borrowed many years ago from Lewis Carroll's poem, Jabberwocky ("all mimsy were the borograves and the mome raths outgrabe") to describe a state of mild sadness and depression. The condition requires family members to tread lightly and definitely NOT to offer gratuitous cheer. It generally passes quite quickly with minimal effects on both the sufferer and the family. I am hoping that the start of cycle 6 on Wednesday will bring an end to it for me.

Saturday, March 13, 2010


I am really tired and it is all my own fault. Yesterday I went to a textile group meeting in the morning. It is a half hour drive from home along the freeway and I am finding driving needs my complete concentration these days. It was extremely hot and I left the meeting early and drove home. Once home I had a bit of a rest, but did not nap - which I should have done.

Later that afternoon we went to the opening of a sculpture exhibition on the foreshore of the Canning River. We loved the sculptures, especially these ones (Bottle Bream) made from plastic bottles, commenting on how plastic waste is affecting our waterways. Bream is a play on words (it is pronounced brim and is a fish that was once very common in the river, but is less so now. It also refers to the rim of the discarded bottles and how they are multiplying - "brimming over")

It was a very enjoyable evening - it had cooled down after what had been a VERY hot day (28 degrees Celsius after a 41 degree maximum) and it was most pleasant to sit after we had viewed the sculpture pieces and enjoy a glass of bubbly and some food while listening to the obligatory speeches.

Today I went to the meeting of my favourite textile group - Designing Women. It was the AGM and we spent quite a long time trying to get members to take up executive positions. I have been Treasurer, but resigned the position for this year. While I want to keep up with my groups, I don't think I need the pressure involved in leadership positions. Eventually all the positions were filled, and we had a workshop on recycling a couple of T-shirts to make one with a reverse applique decoration, followed by a talk from a local fashion designer who uses natural dyes and recycled materials to make her beautiful garments. I was really drooping by this time, but hung on for her talk before I gave in and went home.

I have had a brief nap, but I think I will be early to bed. And Kevin is right - it IS my own fault for doing too much. Tomorrow I plan on doing nothing much at all. It will be day 12 of cycle 5 - Wednesday is the start of Cycle 6, when I will be halfway through the treatment.

Tuesday, March 9, 2010

And it is yet another day

Thank you to everyone who is reading the blog. I sometimes feel it is just too banal and nobody will be interested in details of my feeding and bowel movements - important as they are to me though.

I haven't lost any weight these last three weeks and as I said before - I can afford to lose it. Now I am not nauseous I eat 3 meals a day even if they taste blah. The only foods I cannot eat any more (BOOHOO! because I love them) are spicy ones, especially curries. They are painful on my tongue and lips.

I have been working on my textile art for the last 2 days (more information in My Textile Blog in the sidebar). I think trying to do the things that I have enjoyed in the past has helped me not to dwell on what a godawful fight I am facing.

Today has been an "ordinary"one. No nausea, no diarrhoea, no taste. PICC line flush tomorrow.

Sunday, March 7, 2010

A nice night out

Kevin's nephew and his wife live in Colorado and are presently back here in Perth for a visit and so he can sell a million dollar unit he (and I presume the bank) owns. It is in a magnificent position with fabulous views, that I would like to look at every day. Quite beyond our pockets though! We were invited to a family gathering for cocktails at sunset. Most enjoyable - I drank bubbly. We left reasonably early because I got tired, even though I spent most of the evening sitting down.

View down river towards South Perth.

View across to Perth city as the sun set.

I have been feeling OK since the chemo on Wednesday. After pump-off on Friday I had lunch with my sister at the Art Gallery Cafe. We shared a single serving - we both find cafe servings are really too large. It was a very nice quiche with salad a balsamic dressing and tasted good. Afterwards we went to look at the annual exhibition of High School students artworks. It gets better every year.

Wednesday, March 3, 2010

Cycle 5

My white blood cells were OK in yesterday's test, so I had my 5th infusion of oxaliplatin, fluorouracil and leucovorin today and am now home with the attached pump feeding in 100ml of fluorouracil over the next 46 hours.

The oncologist wants me to continue on a fortnightly treatment regime so he has lowered the dosages. Apparently I received the maximum doses on the first four cycles and that was a bit too toxic for my white cells. I am quite happy to continue with fortnightly treatments - I want this over and done with ASAP.

A bit of good news - the CEA (tumor marker) continues to fall and is now 1300, compared to 9000 on initial testing. Still a long way to go, but a really good sign that the chemo is doing the cancers some damage.

I am now booked for another CT scan at the end of this month, though I don't know the exact date as yet. I can't wait! Hoping for good news of course, but really want to know if this has been worth while. I will have had my 6th, maybe even my 7th cycle by the time it is done, so I will be more than halfway through the course.

Monday, March 1, 2010

Feeling Good

The extra week without chemo has been great. The finger tingling has almost disappeared - I can get stuff out of the fridge easily, though it's a bit more difficult from the freezer. Food tastes quite good, if a little bland - I seem to be using more seasoning. My mouth and nose are not sore, though there is still a bit of a nose drip. I have had two nights where I slept straight through. I am still getting tired very quickly though and need to rest a lot.

I am still having problems with the knee I hurt when I fell over almost a fortnight ago. It is still very swollen and painful and the bruising has progressed down my leg almost to the ankle. I also have a painful bruise on the other leg - not sure where that one came from. I am not sure whether all this is cancer related or not, so I will be asking some questions on Wednesday.

Blood test tomorrow and oncologist on Wednesday, followed by chemo if the blood is OK. Hope so, I want to get this treatment done with.