Monday, June 28, 2010

Look Good Feel Better

Today I went to a free workshop run by the Cancer Council for women with cancer. It is basically about makeup and head gear. The workshops have been running for 20 years in Australia and are supported by the beauty companies. Every participant gets to use a wide range of beauty products, then takes them home in a goody bag. You can see some of the products in the pic below.

The leaders/tutors are all volunteers. The lady standing on the left has been doing the workshops for some years, now has breast cancer herself, but is still doing them for other women.

The lady seated on my left (I'm the one in red in the middle) is Catherine. She was today's model for the scarves, turbans and wigs that were brought along for the participants to try. Her grand daughter was responsible for her head decoration - I thought it was terrific. I still have hair, but it is getting thin, as you may be able to see.

Kevin came along and took photos (with permission) and we have burned some CDs to send to the wig lady, the organiser and, of course, Catherine.

I am so glad I went to the workshop. I am now going to see the wig lady because my head is feeling the cold, and I am also not keen on the pink patches on my skull.

BTW, the Cancer Council also runs these workshops for men. I guess they don't come away with so many cosmetics, though!

Friday, June 25, 2010

What a week!

This has been a pretty eventful week.

Monday I went to the GP who took careful note of my aching shoulders and legs symptoms and thought I might have fibromyalgia rheumatica. This can be determined by a blood test, so off I went to have one with another appointment organised for Tuesday.

Tuesday morning I put in my contact lenses as usual, then inserted the drops I use every morning to correct dry eye. Instant agony in my right eye. OK, remove the lens, wash out the eye, wait a bit and reinsert. Done it a hundred times. But not this time. The lens was stuck to the cornea and I couldn't get it out. Eventually, after much bathing with saline, I managed to remove it, but it was still very painful. Once it was office hours I phoned my optometrist who recommended some other drops and bathing, and to get the doctor to look at the cornea when I went to see her. I had to get Kevin to drive me - my glasses are not good enough for driving. The doctor said I had damaged the cornea and needed to spend at least another 24 hours without lenses. And the blood test showed I didn't have FMR, but I did have a slightly high thyroid reading (which opens another whole can of worms). She admitted that she didn't have any idea what the problem was at the moment, but recommended a visit to a physical therapist, an increase in exercise if I could manage it and another blood test (not urgent) to check out my thyroid.

Wednesday morning I was energetic enough to do some housework, then I went to the fortnightly meeting of one of my sewing groups, driven there by a friend. A good day, even if I was unable to eat much of dinner.

Yesterday morning I put in my lenses without a problem. Wonderful! I went and did the grocery shopping to celebrate being able to drive again. I didn't feel like eating much lunch, but found I quite enjoyed an apple sliced with some ricotta cheese.

In the afternoon Kevin took a friend to see his GP. Haddon has prostate cancer which spread to his bladder and bones, and he has been feeling really unwell lately - too unwell to drive. Since he usually has to wait for his doctor to see him, Kevin left Haddon and his wife and went to see another friend. He took his mobile phone, but left it in the car. (Be patient - this is a pertinent fact). At home in the meantime I had decided to do some clearing out of excess clothing. As I reached under the chest of drawers for some unwanted shoes I overbalanced, landed on my backside and fell backwards, hitting my head on the wall. While I didn't blackout, I was dizzy and had a bit of blurred vision. A huge egg popped up immediately on my skull and I had a bad headache.

I went to the phone and tried to ring Kevin. No answer. Then the phone rang. The doctor had been prompt and Haddon and Margaret were ready to be picked up. I rang Kevin again. No answer, so I rang the friend he had gone to visit and he was still there. I sent him off to pick up H & M, then to come home.

While I was waiting I decided to ring HealthDirect - a government telephone service which advises people about their options if they are worried about some illness or injury. It is mostly used by the parents of young children (wish it had existed when our kids were small) but caters for all age groups. The nurse on the end of the line wasn't too concerned until I mentioned my daily shot of Clexane in the list of medications. Because of this, there could be the possibility of bleeding in the brain from a blow like the one I had given myself, so she recommended I attend an emergency department at a hospital for tests.

So off to Murdoch we went, prudently packing an overnight bag just in case. Murdoch is a private hospital, so there is a hefty fee to pay, but there was almost no waiting to be admitted (unlike previous experiences with public hospitals). I still had a whopping headache, despite taking some Panadol over an hour before, so the doctor prescribed an IV painkiller and antinausea drug, and a CT scan of my skull. After 4 hours they decided there was nothing seriously wrong and we were released. In the meantime Haddon had also arrived at emergency to await admission for a blood transfusion and draining fluid from his lungs, so Kevin had someone to talk to while I had my scan. When we got home I managed a few mouthfuls of food so I could take my evening dose of Xeloda and went to bed almost at once.

I have been very tired today. Perth is suffering a cold snap - it was zero degrees Celsius in some parts of the metropolitan area this morning - so I have spent most of the day wrapped in a rug and dozing in front of the heater. I vomited this afternoon - the first such episode since my initial cycle of chemo, but I am feeling OK now. Early to bed I think.

Sunday, June 20, 2010

Aching all over

My legs, arms and shoulders have been hurting for about a fortnight now. When I asked the oncologist if this was an expected side effect he said he had not encountered it before. So I am going to see the GP tomorrow - she may have some suggestions on dealing with it.

It has been bad the last couple of days - I have been feeling weak and unable to walk far. The pain is not really bad - in fact, it is comparable to that you experience when you have over-exerted muscles with unaccustomed exercise, but it is definitely not due to that. Exercise has not been a component of my daily life since I began to feel unwell about November last year. Maybe I need to start again, but it is not appealing while I am hurting so much.

Friday, June 18, 2010


The visit to the oncologist today was disappointing. The results of the CT scan I had on Wednesday hadn't reached him, so we had an extra half hour wait while he contacted a colleague at RPH who looked at the scan for him. The result? No change in the tumours. The disease is "stable". At least it hasn't progressed, but I was hoping for something a bit more positive. He has decided that I need to have another scan in six weeks time.

I had an infusion of Avastin and I am to resume Xeloda tomorrow at a slightly lower dosage, so we will see how I cope this time around. He gave me the go ahead to talk to an oral surgeon about my wisdom tooth. By the time I have my appointment I will be at approximately the same stage in the cycle as I was when the infection flared up last time. Could be interesting.

My CEA has jumped considerably - up to 2000, but the liver function markers are completely normal and white blood cells and platelets are fine, possibly because I have had almost two week's break from chemo. So while I didn't have the really good news I was hoping for, the overall situation is reasonably OK.

Wednesday, June 16, 2010

The CT Scan

My appointment was for 8.45 am at Shenton Park and I allowed an hour to get from home to the clinic since it was rush hour. It was only just enough time - it took 25 minutes to travel between the traffic lights at Eric Street and Christchurch - a distance of slightly more than a kilometre, but there are two large private schools on this stretch and it was starting time for them. If I ever have to do this again I will find an alternative route.

Once I arrived I had a cannula inserted then sat and waited while drinking the obligatory preparation liquid over an hour. Once in the room, the CT scan proceded normally until the time came for the infusion of the contrast dye through the cannula. The technician set the pump going and left the room. I felt an unusual warm feeling on my arm and almost none of the usual warmth in the lower abdomen. When the technician came back he found that one of the valves had failed and about half the contrast dye had leaked onto my clothing. Yuck! It was a sticky mess. More importantly, it was possible that the scan had failed to register properly and would have to be repeated. The matter was referred to the doctor on duty who couldn't be contacted. I lay waiting for 15 minutes until he was found, had looked at the pictures and decided there was enough detail to make a report.

I really hope this is the case. I am waiting impatiently until Friday and the visit to the oncologist.

Tuesday, June 15, 2010


I haven't blogged for a few days because I have really had nothing to say. I have remained well - no diarrhea, very little nausea and some appetite. I have felt tired, especially if I do a bit too much, like yesterday when I vacuumed the house in the morning, then went grocery shopping in the afternoon. But I managed to cook dinner: frankfurts, mashed potato with onion and steamed cabbage - one of my favourite meals. Liked the vegies, but could only eat half of one sausage. I really don't like the taste of meat any more.

It is six months today since my cancers were diagnosed. I remember sitting in the surgeon's office and him saying they were incurable and that I would have about six months to live without treatment. At that stage it wasn't clear if I would have surgery first, but when the colonoscopy showed there was no bowel obstruction from the cancer, it was decided I should have chemotherapy first.

So here I am, six months on, feeling not much worse than I did before I was diagnosed. There are some things that have changed - my hair is starting to get really thin and my nails have bumpy ridges and are peeling. But the neuropathy in my hands seems to be much better. I am still doing the things I enjoyed before, if more slowly than previously. And I am looking forward to some good news from tomorrow's CT scan when I see the oncologist on Friday.

Friday, June 11, 2010

Dining Out

Today was pretty full on. I had an appointment with the optometrist to get some glasses to wear over my contacts for close work. I am sick of having to use a magnifying glass to thread a needle! Then I went to one of my textile groups, but left early because I was both tired and COLD (the meeting is held in a hall which only has a couple of oil column heaters to warm a large area).

I came home and had a rest (not a nap, just reading blogs and emails). An unusual thing occurred - I began to feel hungry. It is so long since this has happened that it is a cause for celebration, so we decided to go out to eat. I felt like eating Chinese and we had a flyer for a local restaurant that was under new management, so we decided to try it out.

What a disappointment. The fried rice was good, but the seafood with mixed vegetables was inedible - both the squid and the fish tasted off, not just to me, but also to Kevin. We quite liked the sweet and sour pork, but by then my appetite had gone. We asked for the rice and pork to be packed in "doggie bags" to take away. The waitress questioned why we didn't want the seafood and we explained we thought it was off. When she came back with our requested leftovers she also brought a container of the seafood which she said was "fresh, just cooked". We took it home with us, but neither Kevin nor I have been brave enough to taste it. We will try it tomorrow. Let's hope we don't have upset tummies.

Thursday, June 10, 2010

A Good Day

I have felt really well today. The gum inflammation has calmed down, I haven't had any diarrhea or nausea and my taste has come back. Not completely - meat still tastes horrible - but vegetables and fruit are fine.

So I celebrated by cooking a big meal for dinner. Scalloped potatoes with onions and sage, baby carrots with honey and cumin, broccolini, nannygai (a local firm white fleshed fish) and my own version of tartare sauce. It was yummy, and I managed all but a couple of spoonfuls of my serving.

Such a change from a few days ago when all I could eat was a couple of spoonfuls of anything.

Next week will be busy. I have decided to take advantage of some of the services that are offered by the West Australian Cancer Council so I am going to book in to one of their workshops on coping with hair and skin changes. This is on Monday. Tuesday I am going to one of my sewing groups, Wednesday I have my long awaited CT scan, Thursday will be a blood test and Friday is the appointment with the oncologist, an infusion of Avastin and possible resumption of the Xeloda.

Wednesday, June 9, 2010

The Silence of the Dying

I keep the lift out magazines from the weekend papers to read later in the week, and I hadn't got to last Sunday's yet, when I encountered reference to an article in it on one of the blogs I read. So I had to find the article and read it. It is in the Perth Sunday Times magazine of June 6.

The article is an interview with the Australian writer Sara Douglass who has ovarian cancer and contains excerpts from a blog entry she wrote on May 22, called The Silence of the Dying. I read her blog regularly, and had read the article which I found very moving, and had made a comment. Now there are nearly double the comments, many now from people who read the article over the weekend.

Reading it again, I think it should be required reading for anyone who has dealings with a person who is terminally ill. I wish I had read it before my father died 10 years ago and before the death of the partners of friends. I would like all my friends and relatives to read it. Read it for yourself.

Tuesday, June 8, 2010

A visit to the dentist

This morning the infection in my mouth (not an ulcer - the skin was red and swollen, but unbroken) was so painful I couldn't open my mouth very wide or chew and I had referred pain in my ear. I had yoghurt for breakfast - no chewing required, and no solid bits to lodge in my teeth to be dislodged by painful brushing.

I decided to ring the dentist to see if there was a vacant slot I could take and there was! The appointment was for 1.30 pm and in the meantime I did lots of warm salt water rinsing, with the result that when I finally saw the dentist I felt a bit of a fraud because it was no longer so painful. However, he thought it was serious enough to send me downstairs to the radiology clinic to have an X-ray taken of my entire set of choppers.

The X-ray was only slightly more comfortable than a mammogram. You stand with your teeth clamped on a protruding plastic piece (covered in plastic film, fortunately), with your head clamped on either side. You are required to take a step forward, then lean back at an angle, holding on to two handles for support. You have to maintain this position without moving for 25 seconds - which seems like a lifetime. I did move while the first picture was taken, so the entire procedure had to be repeated. Fortunately the second take was OK.

Back at the dentist's rooms he decided that the picture wasn't quite clear enough, so he did two more X-rays. These were the dentist type, where the plate is inserted into your mouth and everyone but you skedaddles out of range while the picture is taken. This was quite a painful procedure, what with having to open the mouth wide and the plate pressing on my swollen and painful gum.

And the result? The tooth where the infection is is my one and only remaining wisdom tooth. It sits up against the jaw hinge which makes it hard to clean properly and is no longer sound (dentist talk for rotting?). It will be the source of probably many more infections, so it needs to be removed. I am to make an appointment with an oral surgeon. The problem of course, is chemotherapy, so I have to consult with my oncologist first, which is 10 days from now. Plus there is an infected area on the roots of one of my other teeth which may also cause problems, though it is fine at the moment.

So more warm salt water rinsing. If the infected area doesn't clear up in three days I am to fill the script for antibiotics which I have from my last dentist visit. Oh joy!

Despite the fact that I had no appetite today for breakfast and lunch, I decided to make a pot of French Onion Soup. We had it for dinner tonight, complete with cheese covered bread that had been placed on top and cooked in the oven. It was yummy (once it cooled down) - the first thing I have really enjoyed for days. I hope this is the sign of better things to come.

Monday, June 7, 2010

Upsetting TV ads

If there is a prize for insensitivity it would have to be awarded to Channel 7 Perth.

Last night at about 7.05 pm, the channel aired a moving ad from HBF (health insurance) which featured a woman dying of cancer. It was immediately followed by an ad for Mareena Purslowe and Associates, Funeral Directors. This confronting combination made me burst into tears. I am still upset thinking about it.

I have made a formal complaint to the TV regulatory authority.

It was hardly tactful, either, given that this week is Bowel Cancer Awareness Week here in Australia.

I felt much better yesterday, but today is another not so good day. I am still nauseous (I took a Pramin first thing, but it is having little effect) though I managed a half slice of toast with stewed tomatoes for breakfast. And I am visiting the loo with depressing frequency.

Saturday, June 5, 2010

Stopping Xeloda

I have been really unwell today - nausea which prevented me finishing my breakfast, a painful mouth ulcer up near the jaw hinge, the beginning of diarrhea, stomach cramps and chills (though my temperature was normal). I rang the doctor - my oncologist is at a conference in the US - and was advised to stop taking Xeloda immediately and not to resume until my next appointment with my own doctor. This is a fortnight away, but I only had 5 more days on the Xeloda cycle.

I am disappointed that there will be nothing attacking the tumours, but relieved that I may have chance to get over this.

Friday, June 4, 2010

Date set for the next CT scan

I had heard nothing about my next CT scan from RPH (the hospital which is hosting the clinical trial I am involved in) even though my oncologist had faxed through the request ten days ago. So I rang the oncologist's receptionist who made enquiries for me. They apparently just got round to scheduling today and it is to be on Wednesday June 16th. This was supposed to be the day I would see the oncologist next, so she has rescheduled my appointment for Friday 18th (to give them time to get the report to the doctor) and has also organised a change of date and time for the Avastin infusion at the Ivy Suite. Hooray for helpful aides - it does make life a little less stressful. The scan is to be at an annex to RPH in another suburb, so I won't be able to take the train. I will have to drive.

I have been thinking that I really need to make a more consistent effort to get regular exercise - it is too easy to spend all day on the computer or the sewing machine. This morning Kevin and I set out for Manning Park, which has been one of our favourite walking spots in the past. However, today turned out to be one of the days that the osteoarthritis in my legs and hips decided to flare up so the walk was not as long as it should have been. It was lovely to be out in the sunshine, though, even if it was chilly in the shade when the wind blew. I had a nap when we came home.

I have been nauseous all day today again but I haven't taken any medication. I am still without a sense of taste, except that I find soup liquid quite palatable. Can't say the same for any meat or veges it contains.

Thursday, June 3, 2010

Visit to the eye specialist

I have just come back from visiting the eye specialist. One of my eyes has got worse and the cataract in it could be operated on, but it is not yet affecting my sight in a major way. I was glad to hear that - at this point I would rather not suspend chemo for anything else than urgent surgery. I am to go back to him in a year's time (I am refusing to contemplate the possibility that I won't be able to make it - I will be there!)

Now I need to make another appointment with the optometrist to sort out my vision problems with new glasses. I will have to wait a week or so though until the eye drops clear up the blurring.

I have had almost continual low level nausea today which has not been connected with feeding delays. It was bad enough after lunch for me to take a Pramin in case something bad happened at the eye clinic. It worked, but the nausea is back. Something to write about in my Xeloda diary - there's not much in it so far.

Tuesday, June 1, 2010

More medical visits

I had my annual visit to the optometrist this morning. It was very frustrating. I have worn contact lenses since I was 18 (OMG - 50 years!) but recently I have been having problems with gunk building up under the lenses during the day so my vision becomes blurry. I also cannot see closeup as well as I used to.

The optometrist couldn't take accurate measurements because of the vision blurring, but she did determine that I can definitely see better with my lenses than with the glasses I have (and hate) for emergencies. She was talking about some glasses to wear with my lenses for close work. Then she examined my eyes for cataracts. I knew I had them in the early stages (I have seen a specialist who just told me to come back in a year or so), but apparently they have noticeably worsened since last year's examination. In addition, I appear to have some sort of foreign body embedded in my left eye.

So off to the eye specialist I go again. I was able to get an appointment for Thursday afternoon so I won't have long to wait for more information. In the meantime, any modifications to my lenses or glasses remain on hold, but I have to use eye drops to help keep my eyes moistened which will reduce or eliminate the blurring.

I am managing quite well with the Xeloda. I am eating small (and tasteless) snacks mid morning and mid afternoon to stop the nausea. No other side effects as yet. The finger and foot tingling from the Oxaliplatin is still present, though less worrisome.