Irinotecan cycle 1, day 1

We had to wait close to an hour to see the oncologist yesterday, so consequently my infusion was delayed and we finally left the hospital at 8.10. I was hungry and thought I could eat some fish and chips. No luck - it seems all the fish shops in Freo close by 8.30 so we had to come home. I cooked up some frozen sesame toasts and enjoyed a couple. We watched a bit of television and I hit the sack just after 10.

I am feeling pretty good this morning and ate my usual breakfast. There are some signs of diarrhea starting, but nothing serious as yet. I have put on a load of washing and plan a visit to the supermarket later in the day.

The Wedding Weekend

Saturday was a lovely day - sunny, but not too hot. The sun did cause a few squints and eyewrinkles in the photos though. This is the Lock family after the wedding. There are more photos on the family blog and on my blog. We borrowed a wheelchair because the wedding site was quite a distance from the carpark and I was pretty grateful for that.

Helen looked beautiful. She did not wear the traditional white and her brightly coloured dress was matched by James' purple shirt.


The wedding was in the morning in a lovely park by the river with the reception being lunch at a riverside restaurant. The food was excellent, and I had a good appetite. We were paying and I wasn't too overwhelmed by the final bill.

We got home about 5pm and I went straight to bed and slept the clock around. Yesterday Shirley (Kevin's sister, who came up from Esperance for the wedding) and Graham came round in the morning. I made pizzas for lunch and ate one largish slice. We then took Shirley to the airport. Later we went to my sister's to return the wheelchair. She had guests and I ate a bit of finger food. Dinner was icecream and fruit though.

I have been feeling well for quite a while, and enjoying it. I start irinotecan this afternoon and hope the side effects are manageable.

Cancerversary

It is one year ago today that I was diagnosed with Stage IV colorectal cancer with numerous metastatic tumours in the liver and a few in the lungs.

It has been a hard year. I have had 15 rounds of chemo treatments with various drugs. Side effects have been horrific - complete loss of appetite, constant diarrhea and nausea. I lost 30 kilos in weight. The chemo treatments have not stopped the spread of the disease. My last CT scan showed that some of the liver tumours had coalesced (joined together) and the lung tumours had enlarged. Then I had SIRT (selective internal radiation therapy) where radioactive spheres are injected into the liver. We won't know how well that worked until another CT scan in January.

But all in all, looking back on the year, I rejoice in that I AM STILL HERE! I am feeling well, and I look forward to a few more cancerversaries. I went to the dentist yesterday for a checkup and got a clean bill of health in that area. I am told I am looking pretty good with the weight loss - getting compliments on the slimmer me. The wedding is in three days and the weather forecast is good - neither too hot or rain. It's all good.

Some sordid details - and some gifts.

I have not been really well the last few days. I have been badly constipated, which I felt probably poisoned my whole system. I asked the IV nurses for help on Friday when I had my PICC line dressed, and they made some suggestions of things to take. I had not had a BM for 3 days then, and they said if I hadn't had any action in 24 hours I should contact my doctor.

Saturday was the Designing Women Christmas lunch which I was really looking forward to. I vomited up my breakfast and Kevin thought I really should not go, but Juliet had offered to take me and I knew I could just sit. I am glad I went. There was an impressive array of food (I didn't eat much, but I managed some savoury food as well as some of Pauline's to-die-for icecream cake) and Delys made a wonderful non-alcoholic fruit punch of which I drank at least 5 glasses. We always exchange a handmade Christmas decoration and I received two lovely baubles from Jan. In addition, Jaslyn gave me a lovely angel.




I went to bed soon after I got home and slept till 6 or so. I couldn't face any food and went back to bed about 8pm. Then the floodgates opened from both ends. After a cleanup I went back to bed and slept well all night. This morning I was hungry for my breakfast and I am feeling well, though thirsty. I am drinking lots.

Afternoon Tea

Yesterday we went to visit my uncle Boy (my mother's only brother) and aunt Pat. We were invited for afternoon tea. Boy and Pat have an enormous family (eight children, twenty-plus grandchildren and twelve greatgrandchildren). Number twelve GGchild was born on Sunday morning, so there was a lot of excited phoning going on, especially from the the new babe's grandmother who is on a cruise in New Zealand with husband and sister and brother in law. During the course of the afternoon all the other children, plus assorted grandchildren, dropped in. It wasn't arranged - I get the feeling that it's customary on a Sunday.

Just as well Pat had overcatered as usual. I did manage three battered prawns and a mince pie, a good effort since I had eaten a big slice of pork and quite a few vegetables for lunch. I didn't have any dinner and went to bed really early.

My uncle Boy (John) also has cancer. His is prostate cancer which has metastasized to the bones. He has had hormone treatment, radiation and is now going to have some chemo in a week or so. I don't know what drug, but the oncologist has said it's quite gentle and they will stop if the side effects are too bad. Boy's oldest son, also John, is a doctor, and he is heavily involved in vetting Boy's treatments.

Boy is 86 and is visibly more frail than the last time we saw him a couple of months ago. He is now using a walker and confesses to frequent naps. He was quite chuffed when I told him I needed them too.

It was a lovely afternoon, but I am actually quite glad that we don't have such a large family to just drop in on us.

Chemo delayed

I was supposed to have a dose of irinotecan today, but when we went to see the oncologist he offered me a choice. I NEED to start chemo again soon or the gains from the SIRT will not continue (my CEA has dropped from 9000 to 7000). However the doctor agreed that the side effects from irinotecan are as bad as I had read and that in two weeks' time I was likely to be suffering from diarrhea and nausea as well as possible hair loss. I could have a small dose today and have some side effects, or wait till after the wedding and have a massive dose after.

I know Kevin wanted me to do the chemo, but I really want to feel as well as possible for the wedding. It may shorten my life, but I will be smiling on the day and hopefully not worrying about toilet breaks and throwing up. I will not experience our daughter's wedding again - it is worth anything to be able to enjoy the day.

The wedding is on the Saturday 18th - I have my dose of irinotecan on Monday 20th. I might even be able to enjoy Christmas lunch if the side effects don't kick in too quick. Today I had my PICC line dressed and organised for the next two dressings before the chemo.

Martin seems to be doing OK, though he still has daily dressings of his IV antibiotic. He is going to stay with us the night before the wedding - much less hassle.

Nothing New

I am doing pretty well at the moment. Reasonable appetite (well, reasonable compared to some times in the past!), no diarrhea, tiredness that is not too overwhelming. The only new thing that worries me is pain that has developed in my left side which I can control with Panadol.

One of the problems with the Big C is that you are never sure whether a problem is cancer related or something else that a GP could be consulted for. I have an appointment with the oncologist on Friday - bloods on Thursday - so I will wait to consult him about the pain. I am also concerned about a continually stuffed head (like a cold) which only happens when I get vertical so I'll mention that too.

I am scheduled to have my first dose of irinotecan after the consult. Hoping the side effects will be bearable - it's only 2 weeks to Helen's wedding. We had a small gathering of friends and family here on Sunday afternoon in honour of her and Kevin's birthdays - his was Monday. Lovely afternoon, though I had to wimp out and go sleep before everyone had left.

Martin seems to be doing OK, though he will still be under medical supervision till Christmas.

And here's what I made for dinner last night - Vietnamese Rice Paper Rolls with fresh herbs and prawns. One was enough for me - Kevin ate the rest. Yummy!