Friday, February 26, 2010

A Family History

This is not the first time we have battled cancer as a family.

Ten years ago Kevin was diagnosed with prostate cancer. He had a radical prostatectomy which was successful in completely removing the cancer, along with his prostate, and no further treatment was required. We both knew the risks from surgery and were prepared for the possibilities of incontinence and impotence. The first healed itself quickly. As for the second: "Dead men don't have erections either " and life is still fulfilling for us both. While he has had the "all clear" for five years now, he still has his PSA checked regularly.

When he was diagnosed, he went on a crusade to persuade all his male friends to have their PSA checked. Even so, one of our friends was diagnosed with prostate cancer which had spread to his bladder. He now also has bone cancer. His operation was successful in removing the prostate cancer, but he is still undergoing chemotherapy for the metastases.

My father developed bowel cancer when he was in his seventies. He had a bowel section and had to wear a colostomy bag for eighteen months, but the cancer was eliminated. He died shortly before his eighty fourth birthday from kidney failure.

One of the things I now regret is that I didn't insist on regular colonoscopies after I turned sixty. The GP had my family history on file, but the suggestion was never made and I didn't want to pursue it.

Kevin is more proactive. He has a colonoscopy every two years. His father, Arthur, also had bowel cancer. By the time it was diagnosed it had spread to his liver and he died within three years in January, 1990. While Arthur had some chemotherapy it was not the organised regimen that is prescribed now, 20 years later. He also had radiation as a last chance therapy, but no treatment succeeded.

I am grateful that treatments for bowel and metastatic liver cancer have progressed so much in the last twenty years that I have a much better chance of a far longer survival than Arthur had. I know my cancers are incurable - I just want to live as long as possible with them doing me as little harm as medical science can provide.

Thursday, February 25, 2010

Some good days

The oncologist's receptionist rang yesterday while I was out enjoying the company of my sewing group. Wonderful lady! She has reorganised my appointments so I see the oncologist on Wednesday instead of Tuesday and the chemo will be done after that. So all I need to do on Tuesday is get my blood test which can be done locally. No traffic hassles, no waiting for hours.
Many thanks, Denise.

I am feeling good. My taste is almost normal and the finger and tongue tingling not too bad. My knee is still hurting from last week's tumble and I have to be careful not to bump it, but all is well otherwise. I usually feel pretty good the last two days before chemo - a real bonus to have an extra week.

Tuesday, February 23, 2010

Taking a Break

The trip to the hospital and our 8.45am appointment with the oncologist took 55 minutes. We didn't go on the freeway all the way - which was almost certainly a big mistake because the other roads were absolutely choked. However we got there just in time and didn't have to wait to be seen.

Yesterday's blood test showed my white blood cells were too low for the Folfox treatment, so that has been delayed for a week to give the bone marrow a bit of a break. However, I had a reduced infusion of Avastin which doesn't attack white blood cells so the trip wasn't a total waste of time.

Next week will be difficult. It is a public holiday on Monday, so no blood test is possible. I will have to go to the pathology collection centre at Subiaco very early on the Tuesday, then see the oncologist 2 hours later. Except that I need food as soon as I get up we could go to a cafe for breakfast. The clinic and ward are fully booked on Tuesday, so I can't have my chemo till Wednesday. I asked if I could see the oncologist on Wednesday, but he doesn't come in until the afternoon, which would be too late for the clinic. Thus, two trips in heavy traffic.

We got a copy of the last CT scan report which has some interesting information. Not only the fact that the liver tumours are decreasing, which we had been told, but also a tentative suggestion that the spots on my lungs might not be cancers, but something else. I will be having another CT scan at the end of March and hope for good news then.

Monday, February 22, 2010

Last days of the cycle

Apart from tiredness and the finger tingles I have been feeling pretty good the last couple of days. My taste has come back, so we treated ourselves to a Chinese meal last night. I really enjoyed it. Graham and his friend Faye came along too.

The gas was disconnected fom the cooktop Sunday morning, so we had no cooking facilities, unless we used the outside barbecue - that was my excuse for going out to eat. The new induction cooktop was installed this morning. It took a long time and there were a few mishaps, including a hole in our bedroom wall which Kevin now has to patch. I went shopping for frypans this afternoon - ours were all aluminium which doesn't work. Wasn't too impressed with the price, but we needed them. I have had to discard two more pots. a stock pot and a small milk saucepan, which didn't pass the magnet test even though they are stainless steel, so more purchases are on the horizon. The Salvos will get what I can no longer use.

I went to get my blood test this morning, rather later than usual. Didn't get the fast track treatment this time - I had to wait nearly 40 minutes. Parking was harder too. Note to self: go earlier next time. We will have to leave home early tomorrow in case of freeway problems - the oncologist appointment is at 8.45 am.

Friday, February 19, 2010

Kitchen Kapers

The new oven has been installed and I have spent some time reading the instruction book. I have been running it for a couple of hours to get rid of the "new" smell. I plan to use it for real cooking tomorrow.

The cooktop could not be installed because the electrician did not know it was in place of a gas one. The gas needs to be sealed off - something he cannot do legally - and a new cable installed because what power is there is only enough for the ignition sparkers, not enough to run a cooktop. He is coming back on Monday morning.

I went grocery shopping this morning and managed quite well though I am very tired now. Diarrhoea has appeared again, though Kevin says it is probably because I have had a couple of glasses of wine now the enforced abstinence of antibiotics has concluded. The dentist rang this afternoon and recommended that I not use the second antibiotic prescription she gave me unless I have a flareup. I'm quite happy about that.

Wednesday, February 17, 2010

Status Report

I have been quite active for the last couple of days, even though I have not felt really well. Nothing specific, just a bit wobbly - I can't think of a word that describes it better.

Monday I spent time in my sewing room and made some decorated hand towels - the monthly challenge for one of the sewing groups. Tuesday morning I went to the meeting and enjoyed myself talking to people. Then I went shopping and took a tumble as I walked from the car to the shop. Quite a shakeup and I am sporting a big bruise on one knee.

Tuesday afternoon we went to look at some kitchen appliances. Our oven is 17 years old, no longer has an accurate thermostat and is going rusty, and I hate cleaning it. So we bought a new one - a self cleaning version. It will be delivered on Thursday, along with a new induction cooktop - another thing that will require less effort to keep clean. They are supposed to be installed on Friday, but we haven't heard from the installer, so that may not happen till next week.

Today I have done some natural dyeing with lavender from the garden and filled in entry forms for two textile exhibitions that will happen in May. I have also paid all the outstanding household bills so I feel pretty virtuous.

Tomorrow morning I go to the hospital for the weekly PICC flush. I am planning to visit my uncle and aunt after that. My uncle is 86 and also has cancer - prostate that has metastased to his bones. He is not undergoing any treatment other than palliative care.

The finger tingling is definitely not improving, but I have finished the antibiotics and the tooth abscess seems to have gone. I start Cycle 5 on Tuesday.

Sunday, February 14, 2010

Maybe I overdid it

I slept well last night for the first time in several days, but I am not feeling well today - nothing specific like nausea or diarrhoea - just a bit shaky and lacking focus. Reading the Sunday paper was quite a task.

I am blaming my blahs on the fact that I went to one of my groups yesterday and stayed the full 6 hours. I am Treasurer until the AGM next month, so I spent a lot of time writing receipts and cheques and collecting fees. Not a lot of physical activity, but quite a lot of concentration required. Then we went to an evening picnic in Wireless Hill Park overlooking the river with friends. I sat all the time, but still felt very tired. Because of the antibiotic I am taking, I couldn't drink, so I was skipper and drove home. More concentration needed.

Friday, February 12, 2010

Keeping up with the groups

I went to Contemporary Quilt Group today. I enjoyed the discussion and the Show and Tell and the social interaction. However I faded fast and left early.

I am having problems with my fingers. This morning the finger tips were swollen and a deep reddish brown. Eventually they turned a more normal colour and the swelling went down, but they are still redder than the rest of my hands. The nerve endings are very sensitive too.

The sensitivity is also in my mouth. I made a curry for dinner tonight, but was unable to eat much because of the pain caused by the spices. Guess I'll start losing weight again if I can't eat - I have been stable for a week. Losing weight is not a problem - I still have plenty in reserve.

Thursday, February 11, 2010

Day 3, Cycle 4

It is getting to be a simple routine. Once the pump indicates "Low Pressure" (5ml to go) I set off for the hospital. Today my appointment was for 11.30, but the pump was finished by 9 am so I went in early and was able to be unhooked and out of there by 10.15.

The antibiotics are working - there is almost no sign of the swelling on my gum.

The neuropathy of my fingers is at least as bad as it has been each cycle. A bit scary this morning when my mouth and throat also reacted badly to the cold milk on my cereal. Another thing to check with the oncologist.

No nausea. No diarrhoea. Not much appetite because the metallic taste is back. Trying to drink lots.

Wednesday, February 10, 2010

More antibiotics

I went to the dentist today. It was supposed to be a quick examination and decision about further treatment, but turned into a full scale consultation.

The lump on my gum/upper jaw has gone down considerably, but the dentist confirmed it was/had been an abscess in the tooth which has a root canal filling and a crown. An X-ray confirmed this. Apparently the aching teeth was a pressure buildup and then the abscess forced its way into the gum and developed the swelling. The prescribed Amoxicillin has reduced the swelling and I am to continue to take that till it it is finished, but I also have to take 7 days of Metronide (which attacks anaerobic bacteria) to get rid of the infection in the tooth.

Before prescribing the Metronide, the dentist rang the oncologist who gave the OK for it. I am glad she did, because I have just read the information sheet on the net and it says that it may affect or be affected by anticlotting drugs and 5-flouracil. That's a bit scary. I may ask some questions tomorrow when I go to have my pump removed.

Tuesday, February 9, 2010

Cycle Four and some good news

We went off to the oncologist early this morning prior to the fourth round of chemo. No problems with the blood counts. The liver function indicators are showing improvement - I don't have details, so don't know exactly what or how much - but any improvement is heartening. The best news was that the tumour marker is dropping fast - from 9100 in December to 2000 yesterday. Still enormous of course - a normal reading for someone without cancer is 5 or 6 - but a good indication that the chemo is working to reduce the tumours. I will be having another CT scan in March - probably after my 6th treatment - and hope for really good news then. And he had a look at the lump on my jaw and thought it might be an abscessed tooth (fits with the tooth ache prior and the speed with which the lump developed). So I have a dentist's appointment tomorrow for an examination and decision on further treatment.

The clinic was full today so I had to go upstairs to the specialist cancer ward for my chemo. The ward deals with all kinds of different cancer treatments and I thought they were less organised than the Ivy suite where my previous treatments have been. It took longer too - almost an extra hour - mostly because they were waiting for the various bags of poison to come from Pharmacy.
And the sequence of administration was different - I got Avastin first rather than as the last drug. I will be checking this with the oncologist when I see him next - a fortnight away - because I wonder if sequencing is important for the clinical trial, and I have to go to the ward again next time because the clinic is fully booked.

I am feeling OK, except for the side effects directly related to Oxyplatin - tingling fingers and tongue with cool (not even cold) things and the return of the metallic taste in the mouth.

Monday, February 8, 2010

End of the cycle

I went to get my blood test this morning. Can't complain about the service - I was taken in straight away by the same technician I have had the last two times and we were out of there in less than 10 minutes. I am sure the express service annoyed some of the people who were waiting though. I hope the blood counts are OK - I really want to get this chemo done. Tomorrow will be Cycle four - a third of the way through.

I still have the lump on my upper jaw, but it is a bit smaller and not as painful as it was. The antibiotic must be working.

I have had a good appetite the last two days and I can actually taste food. Even water is palatable. Enjoying it - I know it won't last. Tonight we shared a dozen oysters with lime juice and homemade Marie Rose sauce, followed by a crumbed fish fillet with a salad of lettuce, spring onion, tomato and avocado. There was olive bread to accompany both courses - yum.

Sunday, February 7, 2010


Yesterday afternoon we went to Mandurah (a city some 70k south of where we live) to catch up with Anne and Doug. Anne is Kevin's cousin and they live in Mission in British Columbia, Canada, but make reasonably frequent trips to Australia because their elder daughter and first grandchild live in NSW. Anne's older sister is a caretaker for the absentee owners of several millionaire type houses on the Mandurah canals and was able to organise for the family gathering to take place in one of them. It was a lovely gathering - I took my camera, but forgot to take any pics!

It would be very pleasant to live in such a spot, but I couldn't help thinking that even if we could afford it, it would be extremely difficult under the present circumstances. The private hospital where all my treatment happens is 25 k away from where we live ( 15 -20 minutes on the freeway except in rush hour). Add another 70k to that - yuk!

But it was a lovely afternoon. Once we got home, I went straight to bed and slept through to 3am. And I was able to sleep a little more after that.

The infection hasn't greatly improved despite the antibiotics. I have some swelling now under my right eye so the sinus is obviously involved. I hope that it will not affect the fourth round of chemotherapy which is supposed to start on Tuesday. My blood test is tomorrow, so I am keeping fingers and toes crossed that white cells and platelets are OK.

My sister and brother in law came to visit this afternoon. Mick has Parkinson's. His speech is badly affected and he has a set of compulsive and distracting behaviours. Despite it all we had had a very pleasant afternoon.

I made a Spanish omelette for dinner and ate quite a lot of it. I have had quite bad diarrhoea today, but took a Gastro-Stop this afternoon which has worked well. I am really tired so another early night is about to happen.

Friday, February 5, 2010

Another problem

My teeth have stopped aching - instead I have a sinus infection. I have swelling on one side of my face under my nose which is still dripping (one of the first side effects I experienced) and it is painful to attempt to stem the flow. The swelling developed very quickly this afternoon, so I rang the oncologist and was told to go see my GP for an antibiotic. I had to go on the end of the consultation list with a 5.30 appointment but it was 6.30 when I saw the doctor. She was surprised to see me - I had visited yesterday for the everyday script refills and she had written me a letter for our travel insurance claim. There was no sign of the infection yesterday, but the aching teeth may have had some connection.

So now I am taking amoxycillin. I don't have a fever, which is good, though my temperature is slightly elevated. I am hoping none of this will affect the next round which is due to start on Tuesday.

I have been very tired the last few days. Yesterday I decided to take a nap which ended up being 3 hours. Result - difficulty in sleeping last night. No nap today.

Wednesday, February 3, 2010

What cancer looks like

A CT scan takes a large number of images in slices across whatever organ/s are being examined.

Here are some CT images of the diagnostic scan that showed my metastatic cancers. Each one of those dark spots on the organ to the left (the liver) is a tumour.

Today is day 8 of the third cycle. I have not had any vomiting or diarrhoea, but am still a bit nauseous and feel very tired. Almost everything tastes metallic, though I have bought a mouthwash (Biotene, recommended by a friend in New York who found it useful when she was having chemo) which helps a bit. Food generally does not taste good, but I am eating OK. There is a new side effect - my teeth ache. I went to have my PICC line dressed today and was told to let the oncologist know about this when I see him next week. I took some Panadol and it has helped.

Monday, February 1, 2010

Starting Treatment

We went to see the oncologist at the comprehensive cancer center at St John of God Hospital in Subiaco on Monday afternoon (December 21). He reiterated that chemo was the best way forward, and invited me to take part in a randomised clinical trial. Half the people in the trial get the accepted chemotherapy as the first line of attack while the others get chemo plus SIRT, a form of radiotherapy. Of course I agreed - I wanted the big guns.

Another appointment was made for Tuesday after I had had a blood test and another CT scan. I have described what happened on the other blog. The CT scan showed that in addition to the liver metastases I also have tumours in my lungs as well as some pulmonary embolisms. Not good news.

Wednesday we had a third appointment, this time at Royal Perth Hospital. This was for establishing participation in the clinical trial. The oncologist decided that I will need a daily injection of Clexane for "ever" because of the clots in my lungs and the fact that I have Leiden Factor V in my blood which predisposes me to thromboses. We were given a demonstration of how to administer the injection, a big packet of skin wipes, a Sharps storage bin for the syringes - and a prescription to be filled at our local pharmacy.

I was sent away for another blood test and got a call on my mobile while waiting for it. The computer had done its randomising and I had missed out on the SIRT part - just chemo for me. I was to have 12 cycles, each a fortnight apart. The first one was to be the following Tuesday, December the 29th, with the pump being removed on New Year's Eve.

It all happened so quickly. From diagnosis to confirmation of the diagnosis to the start of treatment was only two weeks. I am not sure whether it would all have happened with the same speed if we had been solely dependent on the public hospital system, but private health insurance meant we had immediate access to hospital treatment without a waiting period. We have been members of the Hospital Benefit Fund of WA since we were married 44 years ago. It is now obvious the premiums were a worthwhile investment. Another major financial assistance is Medicare (Australian Government health insurance) which covers a major portion of the costs incurred outside the hospital, such as the oncologist's fees. Our third benefit is the PBS (Pharmaceutical Benefits Scheme) which in our case, because we are self funded retirees on a limited income, restricts the costs of prescriptions to $5.40 per script or, once we have had 100 scripts filled, no cost at all. I think we will be reaching the safety net for this pretty quickly this year.