How I found out I had cancer

Readers of my other blog have read all this before, so feel free to skip today's entry, but I thought that I should include the beginnings of this battle.

I had no symptoms of bowel cancer until I got a dose of gastro (camplyobacter) in early November 2009. When I went to the GP she ordered a blood test for kidney and liver function as well as the stool sample. Strong antibiotics cleared up the gastro, but I didn't feel completely well. I was very tired and felt nauseous. I went back to the GP and she ordered another blood test. This showed that one of the liver function markers had deteriorated markedly in three weeks and that another marker was now less than normal. She ordered a CT scan and I had it that afternoon - Monday December 14. I was to see her late Tuesday afternoon, but I was called in to the office in the early morning to receive the bad news: colon cancer and liver metastases - lots of them.

We are fortunate in that we have top of the range health insurance (and have had it since we were married 44 years ago) so I was able to see a colono-rectal specialist at a private hospital that day. He booked me in for a colonoscopy on Friday and made an appointment with an oncologist for the following Monday. The surgeon said that if the cancer was not obstructing the bowel immediate chemotherapy would be the best option, in preference to surgery and then a six week wait to start chemo.

I had problems with the prep for the colonoscopy - I vomited up the first dose - so I was admitted to hospital and the preparation given under supervision. From there all went well, and the colonoscopy showed a single tumour which was not causing obstruction. No need for immediate surgery.

We were booked to go on a 16 day cruise to Indonesia staring on January 4th so that had to be cancelled. Again, thanks to the travel insurance we took out, we will get a full refund of our fares. However, it is taking the cruise line a while to refund us the portion we were entitled to, and we need that before we can claim the remainder. I also need a letter from a doctor to explain the cancellation.

Tomorrow I will write about what happened when I saw the oncologist.

Cycle 3 Day 3

I went to see another specialist this morning - unrelated to the cancers. I have osteoarthritis and last October I had surgery to remove a mucous cyst in the top joint of one of my fingers. This visit was to check that all was well and whether I needed another cortisone injection in my thumb. He gave me the all clear and a letter to use if pain increases in my thumb. One less thing to worry about.

I drove myself to hospital to have the pump unhooked after dropping Kevin off in Perth to have lunch with an old friend of his who is presently teaching in Vietnam and is home on holiday. After a long wait for the unhooking and flush and a pleasant visit with Dale and Ian at The Thread Studio I picked him up and drove home through freeway peak traffic. I was quite shaky and very tired when I got home.

I am finding it difficult to drink enough at the moment, and it is very necessary - not only because of the chemo, but also because of the heat wave we are having. Everything tastes metallic, even with flavouring added. I am also still having problems with handling cold things, including cold drinks. I have to wait till they are tepid, which makes them even less palatable. The effect wears off eventually, but I must take note of exactly when it happens this cycle.

I am also finding that I am not handling frustration very well. I nearly lost it today as I drove three times through the multistory car park at the hospital to try and find a spot. The other evening I blew my top at Kevin, quite unjustifiably, and broke down quite badly. A major crying jag with no real reason.

Third Cycle

The third lot of chemo started today - four hours, then the pump attached. No problems, except the pump started beeping loudly as soon as I got in the car and the readout said " high pressure." I've been told that usually means there is a kink in the line, so I tried to find where the problem was with no luck. Back to the clinic and the problem was quickly solved with a new valve. I'm glad it happened so quickly - it would be a pain to have got halfway home and have to turn back.

I visited the oncologist before the chemo and he repeated the anti-nausea drug regime I had last time. Hopefully this means another good cycle to come. He also spoke about the possibility of surgery for the primary bowel cancer after three months of chemo. It would be good if this happens and the primary could be eliminated so the chemo is directed at the metastases only.

I asked if he had results from last week's CT scan. There seems to be a certain lack of communication between RPH and its consultants - he didn't even know I had had it. He immediately requested a faxed report and told me to come and see him after the chemo. I didn't have to - he came to see me. Good news - there is indication that at least some of the liver tumours have shrunk. Unexpected after only two lots of chemo, but very heartening. I forgot to ask about the lung tumours.

Australia Day tomorrow

I have had a comment from Chris who is also writing a blog about his battle with cancer. Do go visit.

It is Australia Day tomorrow. Time for all the yobbos to display the flag (made in China) on their vehicles and drink far too much. We will stay home. About 20 years ago we used to have an Australia Day party every year. I found one of the invites the other day.


At that time we had a very placid Rhodesian Ridgeback dog who accepted having stripes painted on his back so he could impersonate a thylacine. Hey, Diefer, I still miss you.

I haven't blogged because nothing has changed. I am still doing well, tired, but no nasties. I had the blood test today that determines whether the third chemo will happen on Wednesday. If the white blood cell and platelet count are too low it has to be postponed.

Good days

Friday we had visitors - Margaret and Brian. We have been friends since before Kevin and I married - Kevin and Brian shared a house in Bridgetown in the South West when we were all young teachers there.

Margaret is a double cancer survivor. More than 30 years ago she had surgery for ovarian cancer which disappeared after treatment. Some 4 years ago she developed breast cancer and having had chemo and radiation she is now in remission. It was helpful to talk to her. Different cancers, but a lot of the issues are the same. Thank you, Margaret.

Since her remission they have been travelling heaps: Malaysia over Christmas and New Year, the US and Canada coming up in May. I think I would like to do the same once I get an all clear for a long trip. In the meantime I think we may well be able to manage a week in Queensland in May for the 50th reunion of Kevin's teacher training group.

Today I went to the first meeting of the year for one of the textile groups I belong to. I have had diarrhoea today, but there were no embarrassing incidents. It was tiring, even though I spent most of the time sitting down, but I am determined to maintain as many as possible of the activities I have been involved in. If I can make it I will go.

I have been dozing this afternoon and think I will be early to bed. I have eaten quite a bit today - I have had no trouble with food this cycle.

The CT Scan

I felt well enough to cope with public transport this morning, so Kevin dropped me off at Fremantle train station at 11 am. I just missed the train and the next one was 15 minutes later. OK - should still be in plenty of time. BUT - due to the heatwave we are having the trains are slowed down, plus this particular service stopped at every station. By the time we reached Perth I was starting to think I mightn't be in time but before I panicked I had got to McIver (the hospital station), and was at the radiology desk precisely on time at 12 noon.

I had to drink 3 foam cups of a dye solution before the procedure. Last time I did this (for the CT scan that turned our life upside down) it was quite unpleasant and I had to drink a lot more over a longer time span. Today's solution was liquorice flavoured. While I am not a fan of liquorice it was quite palatable and very easy to drink.

I had hoped that they could use the PICC line for the additional contrast dye injection, but apparently the catheter was not suitable for a fast infusion (I have a blue stopper, the dye needs a purple one) so they had to look for another cannula site. My elbow veins are not very suitable - there were valve problems the last two times I had a scan - so I ended up with a catheter in my right hand. I have a large bruise there now.

After the procedure I caught the train back to Fremantle and Kevin picked me up from the station. Easy, and no long boring wait for him. My sole complaint about the whole thing was that I was told to bring along my previous scans - very large envelopes, quite heavy - and no-one wanted to look at them.

Day 9

I was supposed to get the PICC line flushed and dressed tomorrow, but there was a small sore under the dressing which itself had started to pull away. It has been so hot and I think the adhesive can't cope well with with sweaty skin. I rang the hospital and they were not very busy, so I was able to get it done today. One less thing for tomorrow.

Tomorrow is another CT scan. I think this is the one that is going to be used as the baseline for evaluating results of the clinical trial. It is going to take some time - I have to drink some dye liquid over an hour and a half before the scan. I don't know if they will inject dye this time as well.

I am thinking that I may go in to RPH by train from Fremantle to save Kevin having to take me in and either wait around for a couple of hours or go home and come back which is time consuming and expensive. I will see how I feel tomorrow - I was a bit shaky this morning and didn't want to drive myself so he took me to the hospital.

Otherwise, I have felt well today, though I needed a Pramin first thing. A bit tired, because I didn't sleep well last night again. I had a brief nap this afternoon. And my appetite is good.

Day 8 and bills

I went to one of my sewing groups this morning, then to Medicare to get the refund on the oncologist's bill. Total gap we had to pay : $8.45 for three consultations. We also got a statement from HBF regarding the pathology for the colonoscopy. It was completely covered.

The only procedures so far that we have had to make a major payment on were the insertion of the PICC line and the accompanying X-rays. These were done as inpatient procedures and so we missed out on the Medicare safety net gap. Even with both HBF and Medicare paying out it was still over $300.

I am to have another CT scan on Thursday at Royal Perth Hospital. This is part of the clinical trial I am involved in, so I think there will be no associated cost.

I did not sleep well last night, but I have been fine all day. The superduper anti-nausea drugs stop after today, so I will see how tomorrow goes. I still have Pramin to take if necessary.

Day 7

The revised anti-nausea drug regimen has worked well and I also seem to have avoided the diarrhoea I suffered from last cycle.

I went to a textile artists' gathering this afternoon - I got a lift with my friend Juliet rather than driving myself. I really enjoyed it even though I had over-estimated my stamina. I spent the hot (42 degrees plus) afternoon sitting under an air conditioning vent chatting to any one else who appeared. And thank you, Margaret and Dale - I think I have the Midsomer Murders episode sorted. Most convoluted as usual. Maybe I will be able to stay awake this Friday night.

I was very tired when I got home, but thought a nap would turn into a sleep, so decided to cook. I have had much better appetite this cycle as well. We had bought a small rack of pork last time we went shopping, so I made a fresh herb (basil, mint and parsley from the garden) and macadamia nut crust for it and baked it with potatoes and pumpkin, plus steamed green beans and broccoli. It was yummy. And there is a lot left over for snacks.

Day 6

I took a nap yesterday afternoon which lasted for 3 hours, so I made an effort to stay up later in the evening. I managed to stay awake till 10.30 and then slept right through.

Today has been a good day - no nausea, no diarrhoea, no constipation. I have spent most of the day with my sewing machine and am now aching a bit from being hunched over. Poor ergonomic habits - they didn't use to matter, but seem to affect me more now. I have done some stretching and feel better. Will do some more when I get off the computer. I am tired, but think I will not nap, just go to bed early.

My appetite has been good today as well.

Day 4 and Day 5

Yesterday was far better than Day 4 in the first cycle - I did some washing, some vacuuming and some shopping.

No wonder I couldn't stay awake for Midsomer Murders - I went to bed about halfway through. Does anyone know who dunnit? The creepy innkeeper with the cancer -ridden mother? The guy who lost his Rolex? The previous investigating detective? The tobacco executive? And how many more murders were there? I can't ask Kevin because he dropped off too!

Today we went to buy a replacement for the lime tree that has been struggling in the backyard. It hasn't died, but looks sick, so Kevin transplanted it to another spot. I hope they both survive - we have plenty of lemons, but I also love limes.

I am still having funny reactions to cold food and especially drink. Tap water tastes a bit metallic, so I am adding a little flavoured mineral water to it. I find the mineral water by itself too sugary and strong in taste. A friend has told me that drinking lots of water helps with the chemo - she has been looking after a niece who has been having treatment for 6 months now and that was the advice she was given. I am getting through at least a couple of litres a day.

I did some sewing today - finished another pair of trousers that had been cut out to make to take on the cancelled cruise. I have not felt sick at all, but am feeling tired. I think I might take a nap for an hour or so. Kevin has made fried rice for tea.

Day 4

I have not had the awful nausea and diarrhoea that I had last cycle on this day - the anti-nausea meds are working. I will be taking Kytril for 7 days and while it may cause constipation that is not a problem as yet. The 2 dexmethsone tabets were also extended for another day, then I take one a day for 3 days. So far, so good. Slight nausea this afternoon so took a Pramin.

I am starting to get tired again - it will be an early night tonight. Don't know whether the appetite will remain OK. I enjoyed soup for lunch and we have some fish for this evening's meal. Must go cook it and make a salad.

Day 3, Cycle 2

I had the pump removed this afternoon. It took less than 15 minutes after more than an hour's wait. They were very busy today. Taking a book along is imperative - my present volume is People of the Book by Geraldine Brooks. I am really enjoying it.

I have been well for the last 2 days as I was with the first cycle. The only side effect is severe tingling of the hands when I touch cold things (I have to use a oven pad to get things out of the fridge or I drop them!) and a tingling in the mouth with cold food or drink. This is apparently a common side effect of the Oxalyplatin, though it usually only lasts 24 hours. I just have to remember to take my drinks at room temperature or hotter.

Tomorrow is Day 4 which was horrible last cycle. However I have a different regimen with the anti-nausea drugs, so we will see how it goes.

Second cycle begins

We started with a visit to the oncologist - not my usual one who is on leave, but his partner. I was glad that I have been keeping this journal because he really wanted to know how the first cycle had gone. He has changed the anti-nausea meds so hopefully I won't have the bad few days I did last time. We will see.

The blood test showed my white cells were OK and there was even a slight improvement in liver function. One marker had returned to normal range and the other had improved. Not an indication that the tumours had shrunk (CT scan needed for that) but good that the liver is dealing with all this. The next blood test will include the cancer marker - it wasn't requested this time because it often goes up when chemo is first started. It was apparently over 9000 (normal reading 5 or 6) when the blood test was done prior to my initial appointment with the oncologist - it had been 8000 when I was diagnosed.

Our chemo appointment was at 2pm, so Kevin left to amuse himself for the next 4 hours. I am quite happy with my ipod and and a book and really don't need him to suffer terminal boredom while the weedkiller is pumped in. However, the actual infusion didn't start till after 3, so when he came back at 6.30 there was still another hour to go.

By the time the pump was attached it was 7.30. I had almost finished my book and Kevin gratefully scoffed what was left of the fruit and nuts I had brought to snack on. That was a good idea and I will do it again.

Dinner tonight was the chicken and barley soup I made yesterday with some beans, broccoli and snow peas added. I really enjoyed it. I am not sure whether the inability to eat will happen this cycle or not, so I plan to eat what I like while I can.

There is 100ml of Fluorouracil to be pumped in over the next two days.

End of the first cycle

I went to SJG Murdoch this morning for the obligatory blood test required before the next round of chemo. Great service - I was out of there in less than 15 minutes, despite the usual problem of finding the vein in my right elbow.

I have felt really well the last 2 days. Today I did some sewing, then went to the dentist in the late afternoon. I was overdue for a checkup and thought I should get this done before possible side effects of mouth ulcers etc. I got a compliment - apparently I clean my teeth really well and the calcium deposit was minimal - plus the welcome information that I don't need any dental treatment and that my gums are healthy and should cope OK with the effects of chemo. And a bonus - HBF was charged the standard fee, but the gap (usually considerable and payable by the patient) was waived. Obviously a sympathy vote, but guess who will remain a loyal patient and possibly recommend others?

My appetite has returned to normal so I cooked a favourite meal tonight. Mediterranean vegetables - eggplant, fennel, courgettes, tomatoes, garlic and basil sprinkled with olive oil and sea salt and baked at 200C till done - and lamb cutlets. I also cooked a big pot of chicken soup for tomorrow. Since I don't start the chemo till 2PM it will be quite late when we get home so it will be a bonus just to heat a meal.

While I can't say I am looking forward to tomorrow, it will be interesting to discover if cycle 2 is different to the one I am just finishing.

Day 12

I have felt as well today as I did before the diagnosis. There is still a low level nausea (which I have had for months, now that I look back) which worsens when I go more than 4-5 hours without food.

Even the tiredness is less. However, I took myself into Fremantle today and found I was unable to spend a lot of time wandering the shops. I had to drag myself back to the car after an hour and a half.

I am a little concerned about the dressing over the PICC line. I think the tube is wearing its way out through its covering. If it does I will slap on another dressing pad. Hardly worth a hospital trip when Tuesday is the start of the next treatment cycle.

Days 10 and 11

I am feeling very much better. The PICC line was flushed and dressed yesterday morning. I have a new elastic bandage which is much more comfortable than the last two have been.

We went out to a Chinese restaurant last night to celebrate our 44th wedding anniversary and I ate almost a normal amount of food for the first time in a week.

Today I have done some sitting at the computer type tasks and a couple of loads of washing, as well as the fruit and veg shopping. Haven't needed a nap.

Day 9 and a bill

A much better day, though I woke up nauseous and had to go back to bed for an hour or so after breakfast.

I drove to the library this afternoon, then to visit my friend Juliet. First socialising I have done. Poor Juliet was housecleaning in anticipation of the arrival of her parents-in-law from England tomorrow, but we had a cuppa and a long chat. Thanks, Juliet. Your time was much appreciated.

The bill arrived today for the insertion of the PICC line plus the required flouroscopy to do it - $889.30. Since the procedure was before the end of the year while we were still covered by the Medicare safety net I don't think we will have much to pay. In fact, since it was done in hospital, we may be completely covered.

I will take the bill to Medicare tomorrow afternoon, after the PICC line has been flushed and dressed and I have had my hair appointment. I'm looking forward to a thorough shampoo - it's a bit of a task to accomplish that one handed in the shower - and to having my straggly locks tidied. I have been told that hair loss is not a usual side effect of the drugs that I am being given, so a regular hairdresser's appointment will be an enjoyable luxury.

Day 8

My appetite has improved, though I still can't eat much at any one time. Extremely tired. I fell asleep over a book in a chair this afternoon and woke up with a painful crick in the neck. Must remember that I NEED the naps and that they are much more comfortable prone.

I actually went shopping today, though not for long. Nausea is still a problem.

Taking the fight to the enemy

Life has been somewhat of a roller-coaster ride since diagnosis and the days are slipping away seemingly out of control. I have decided that I need to chronicle what is going on in my (our) life in regard to the cancer fight. Otherwise, in six months or a year when I look back, I will have no pegs on which to hang my memories of what happened - both the good and the bad.

I will write a post in a day or so about how I was diagnosed and the incredible speed with which treatment was organised. The Australian health system is often said to be in crisis, but we have had no complaints about speed or efficiency in getting treatment underway.

I began chemotherapy (Folfox 6 plus Avastin) on Tuesday December 29th - exactly a fortnight after diagnosis. I had a PICC (peripherally inserted central catheter) line inserted into my arm, then Oxaliplatin and Leucovorin infused. This took 3 hours and was followed by the Avastin for another hour and and a half (this drug will take less time in the future). A pump was then attached to deliver Fluorouracil slowly over a 46 hour period and I went home.

Apart from getting a bit tangled up in the pump line, and some difficulty showering, no problems on Day 2.

The pump was removed on Day 3 and the PICC line covered with a dressing. We went to see the oncologist and the next two treatment cycles were organised. I felt fine, and we had a very pleasant New Year's Eve gathering with friends, though I didn't manage to see the New Year in.

Day 4 was New Year's Day and it was really bad. I was vomiting and had serious diarrhoea. I spent most of the day sleeping when not dealing with unpleasant bodily functions.

Day 5 we rang the hospital because I was still very unwell, plus the dressing covering my PICC line had pulled away. The dressing was replaced and we received advice about how to cope with these side effects. Apparently steroids are given at the same time as the drug infusions and these help you to feel good for the first three days. It is important to take anti-nausea drugs as soon as you wake up on the first couple of days after the pump is removed. I did not know that and had only taken them when I felt sick.

I was still unwell on Day 6. I still had no appetite and found it difficult to eat more than a mouthful or two of anything.

Today is Day 7 of the first treatment cycle and I am starting to feel much better. I have not been sick, though I am still very tired and slept for nearly 3 hours this afternoon.