Goodbye Uncle Boy

My mother's brother John (Boy) died on Wednesday. He was 84 and had prostate cancer which had spread to his bones. I last saw him a fortnight ago and was struck by his frailty compared to when we had seen him at a family gathering a couple of weeks ago. His death leaves his wife Pat as the only representative of the previous generation. Now my cousins (and my sister and myself) are the Older Generation - and I'm the Oldest of the lot, yuk!

Boy was called that because he was the only son of my grandparents, born five years after the last of his four sisters. I don't think he was spoiled, but he was certainly treasured. He joined the Army in 1944, as soon as he was 18, and was sent to Borneo. Here is a photo of him and a couple of mates on a captured Japanese gun. He is at the front.

I have lots of photos of him looking dashing in his uniform and slouched hat, and I can remember as a four-year-old meeting him at the station when he returned from the war.

He married Pat in 1947 (Dorothy and I were the flower girls) and set about establishing a family and a career. He trained as a teacher with the government assistance offered to returned servicemen and moved into deaf education, helping to develop the West Australian School for the Deaf. He retired as Principal of a primary school. His family flourished too.

The funeral is next Wednesday. I expect there will be a crowd.

Irinotecan Cycle 1, day 8

Christmas was very pleasant. It was lunch at my sister's house and we had the usual turkey and ham. Cold, not hot, which was just as well as the temperature got up to nearly 40 degrees (Celsius, not Fahrenheit, so it was really HOT). I managed a small amount of ceviche, which is the traditional family starter for celebratory occasions, a minute amount of ham and turkey, but quite a pile of salad and pickled vegetables, then a small slice of frozen Christmas pudding.

That was the last time I had an appetite.

I am feeling rotten. I am so tired that I am sleeping the clock around, getting up and then going back to bed. I have stomach cramps and minor diarrhea. I am nauseated at the smell of food and cannot eat anything after breakfast, so Sustagen is my major food source. I just hope I start feeling better soon - I think these are the worst side effects I have ever had from chemo. My next appointment with the oncologist is not until January 12th, and I will be seeing a locum because the usual doctor is taking his annual leave.

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.

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!

Cause of problem unknown

The oncologist rang at lunchtime today. They have been unable to culture any nasties from either my urine or the PICC line blood, so if I actually have an infection its origin is unknown. I am still extremely weak and I have nasty diarrhea, so the recommendation is continue the antibiotics and rest and drink lots. Not hard to do.

I am going to try and do some shopping this afternoon - it is Helen's birthday tomorrow and Kevin's on Monday. Kevin is going to drive me to the shopping centre so I'm not sure how I am going to manage his gift - maybe just take him to the shop and forget any element of surprise!

Martin seems to be a lot better. He is still having daily visits from a nurse to change his IV antibiotic, and he still has a catheter for urine, but he is in a good mood overall. I hope this lasts so the wedding is not overshadowed by a bad mood.

No news is good news?

I haven't been blogging because there has been nothing much happening. I have diarrhea again and it is knocking me around. I get up in the morning, have a shower and go back to bed again for an hour or so. Each time I have a bowel episode I have to have another lie down - it is a pain to be so weak and tired. It is not helped by lack of appetite - I have again lost the desire to eat.

I have been visiting a Chinese doctor who employs laser acupuncture and my shoulder is almost pain free. I went to him today and he treated the constant "stuffed head" I have had for a while. He ascribes it to pinched nerves - certainly he managed to find some very painful points in my neck. I am going back in a fortnight.

I have a PICC line dressing on Friday, then the following week I will be having the new chemo. It doesn't sound like fun, according to what I have read, but every drug is different, and I may just be able to handle this one better than Folfox6 or Xeloda. I am keeping my fingers crossed that the side effects this first time will be minimal - I want to feel well for the wedding.

Martin is out of hospital, but still has a catheter and a pump for IV antibiotics. He gets a daily visit from a nurse who changes the IV bag - he has been taught how to handle the catheter himself. Yesterday we took him to the hospital where he had more blood tests and it seems there may be a problem with his kidneys. We can only wait and see.

Post Radiation

The SIRT infusion went well, and I have been told the spheres all went where they were supposed to go. I will be slightly radioactive for the next week, but pose no danger to anyone other than small children or pregnant women, and only then if I am in close contact for more than a hour. This won't be a problem.

I arrived at the hospital a bit before 7am, after fasting since the previous evening, and by 7.15 I was hooked up to a Panadol infusion and given a tablet to take. I really enjoyed the water I had with it. The procedure took just on two hours - no pain but a bit of discomfort from lying still. I saw most of it on the X-ray screen -the insertion of the coils to block off the unwanted second artery branch was most interesting. I thought that only one coil would be inserted, but they actually used five. It looked like a scribble on the screen - perhaps a doctor's signature!

After the procedure was finished I was taken to a ward and had to lie still for another two hours, though I was allowed to have water. I have a seal in my groin artery which will dissolve gradually over the next 90 days, but should not cause any problems. I spent the night in hospital. My room was not as palatial as the one I had at SJoG, but it had a lovely view of the the Narrows interchange park and lakes and the city skyscrapers beyond. It certainly helps to have pleasant surroundings when you have to be in hospital.

The next morning I went to have more scans - this time with a Gamma Ray camera. I didn't have to fast for this,so I enjoyed some breakfast. It was these scans that showed the spheres had gone where they were supposed to, so I am really hopeful they will kill off the liver tumours.

After I was released from hospital we went to see the oncologist prior to my having a second push of 5-FU. He had some bad news. In the two months I have been off chemo the lung tumours have increased in number and size, though the most serious part of my condition is definitely the liver. I am to have some more chemo in three weeks with a different drug - irinotecan. I hope I don't have nasty side effects - it is only 5 weeks to Helen's wedding and I do want to feel well for that.

When we got home I went and had a sleep, then we went to the opening of the Designing Women exhibition in which I have some pieces. I was exhausted after a hour or so, even though I found a chair, so went straight to bed when we got home.

Yesterday we went down to Martin's unit to find some things he wanted and then went to see him in hospital. He says he is feeling much better, but his stomach is still distended. He is still having problems with his bowels.

Chemo again

The 5-FU flush was OK this morning - it took longer for the antinausea drug infusion and the line flush than the actual chemo. I have been feeling slightly nauseous all day, even before the chemo, and when I told the nurse she said it was almost certainly psychosomatic, given that I have had very little nausea in the past weeks.

In any case, I have had to take a Pramin this afternoon.

I have made a big pot of minestrone (I don't think it's possible to make a small one) for dinner tonight. I have to fast from midnight and be at the hospital at 7 am. I hope the nausea doesn't happen tomorrow morning, because I'm not supposed to even take a sip of water.

We went to visit Martin after my chemo. He seemed a bit more settled than he was on Monday, but is still complaining of pain. His abdomen is still very distended and he is still having trouble with his bowels and his urination. Helen is going to see him after school tomorrow, and I/we will visit him on Saturday - I don't think I could manage it Friday after both radio and chemo therapy.

More Hospital Visits

But they are not for me. Sunday evening our son Martin rang. He was in a lot of pain and wanted us to take him to Emergency. He lives about 20 minutes drive from us and his local hospital (Rockingham-Kwinana) is another 15 minutes away. He had tried to ring an ambulance but they had said his symptoms were not severe enough. So we picked him up and took him to the hospital and left him there.

He rang us in the morning from Fremantle Hospital. After some tests the Rockingham hospital had decided that his condition was severe enough to warrant treatment at a major hospital. The diagnosis is one or more abscesses on the spine. He is having antibiotics and will continue with them for 6 weeks. They will be administered intravenously and so he too will have to have a PICC line. Untreated, the condition could result in paralysis.

I went to see him yesterday afternoon. He was on an IV drip and had a catheter. He is not a good patient - complaining that he needed more pain relief and that no-one would help him shower. I admit to being relieved when a middle-aged nurse came with the pain relief and dealt with him in a no-nonsense way. I made a quick exit.

Last night the hospital rang us to advise that he was being transferred to yet another hospital - Sir Charles Gairdner - so that he could have access to the major specialist in this field. This morning Martin rang us and told us that they were talking about surgery, though later we were told they are just continuing with the antibiotics.

He has been admitted as a public patient which means all his costs are fully covered. Thank goodness for MediCare. He doesn't want us to visit today, but we will probably call in tomorrow after I have had my chemo since the two hospitals are quite close.

Lunch at Helen's

Our daughter invited us for lunch today. It was great food and I was able to eat most of it (all the vegetables and about half of the baked chicken drumstick).

She and her partner have a Staffy puppy and Ruby provided most of the entertainment, chasing toys all around and enthusiastically jumping all over people. All this exertion tired her out, so we were treated to a half hour or so of her asleep in her bed. She woke before we left, though.


Oh, the joys of raising a child - we had forgotten just how much work it is!

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.

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.