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.

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!

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.

Infection

I have been unwell since Tuesday evening when I had a bad dose of the chills. Even though it was 25 degrees celsius, and Kevin was feeling quite comfortable in a Tshirt, I couldn't get warm at all and was literally shaking like a leaf, while my teeth were chattering like castenets. I took my temperature and it was normal, so I went to bed with two blankets, the quilt and an extra throw rug. I was all better, though very tired, by morning. I spent most of the morning moving from toilet to bed.

By the afternoon I was feeling much better, so I decided to to sit out in the sun. Then the shivers started again, so I called the oncologist. He was concerned and made an appointment for me to see him today and to have a blood test beforehand. I was also to take my temperature regularly during the evening/night.

The shivers continued for several hours, though not at the intensity they were the day before, then suddenly I was dripping with sweat. Took my temperature and it was 38, so decided bed was the best place for me. This was at 8.45. I woke up much more frequently than usual, and I didn't have diarrhea. At 11.55 my temperature had dropped to 37.9. At 3am it was back to 38 and by 6am it was down a bit to 37.5. It was normal when I got up for a shower and to have breakfast, but I was very weak.

We went off to the hospital for the blood test and the oncologist appointment (I packed a bag just in case). Because we had a wait between blood test and doctor, I checked whether I could have my PICC line flushed and dressed today rather than tomorrow and they were able to fit me in. When I saw the doctor, he told me my white blood cells were OK, but I had some sort of infection. I was sent off to give a urine sample (which was a difficulty, even though I had been drinking lots) and to get blood taken and cultured from the PICC line. I had to go back to the Ivy suite for that.

The oncologist is going to phone me on Saturday if I need any further treatment. For the moment, the prescription is rest and an antibiotic (here at home thank goodness). I am feeling pretty good at the moment though I probably need to get horizontal shortly.

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.

Radiotherapy ready to go

We went to the specialist in charge of the SIRT therapy today. He went into much more detail than the oncologist did about the tests I had a couple of weeks ago, but reiterated that I was a good candidate for the treatment, because in the test few of the spheres went where they shouldn't have gone.

The fact that my hepatic artery has two branches means that they will have to insert a titanium spiral in the unwanted branch. This will cause a clot so the spheres can't enter, but the clot will eventually dissolve, leaving $250 worth of titanium there. He is very hopeful that the therapy will have a good result. I have to have a dose of 5-FU next Wednesday, go into hospital for the SIRT therapy on Thursday, stay overnight and then have another dose of 5-FU on Friday.

I am not looking forward to resuming chemo. I have enjoyed having what resembles a normal appetite, though I still cannot eat very large amounts. Tonight I cooked fish in foil with halved cherry tomatoes, thinly sliced onion and lemon, garlic and parsley. We had lettuce and chopped green capsicum and a dob of guacamole with it - very nice indeed.

Monday we drove down to Denmark, a town in the south of the State about four and a half hours from Perth and returned yesterday. You can get more details from the family blog. My feet are a bit swollen today - probably due to sitting so long, though I did wear compression stockings (not TEDS, though). So I am still doing really well overall. I have a CT scan tomorrow, a PICC dressing on Friday and another blood test on Saturday. Busy, busy.

Shoulder Massage

My shoulder has been hurting for some months now. I had several sessions with a Bowen therapist and she reduced the pain considerably. Unfortunately I had to cancel my last appointment since that was the day I went into hospital with vomiting and diarrhea.

Since then the pain has come back. It was particularly bad when I turned over in bed. Kevin has been trying to help by giving me massages around my shoulder blades and where the neck and shoulder join. These gave me some relief, but the pain was still there.

So yesterday I went back to the therapist, and in an hour and a half she managed to reduce the pain to almost nothing. I still have it, but it is much more bearable. Thanks, Gail.

I am still feeling well and eating quite well too. I can't tolerate the smell of fat in the morning though, so poor Kevin had to sacrifice his potato patties this morning when the cooking smell caused me to vomit. He did have two though, and I was able to eat my usual Weetbix and fruit for breakfast.

I'm on holiday

from chemo for the next couple of weeks. I am booked in for the SIRT treatment on November 11 (the tests were fine, hooray!) and have to have a short infusion of 5- fluorouracil the day before and another the day after. This apparently helps the radiation to be more effective. Then I will have another break for a month before starting another different chemo drug: Irinotecan. Unfortunately that will be about a week before our daughter's wedding, so I will keep my fingers crossed I avoid the worst of the side effects: diarrhea, nausea and vomiting, loss of appetite and low blood cell counts.

During my present chemo holiday I have to have another CT scan. If I didn't already have cancer, I might be starting to get concerned about all the radiation from these!

I am still feeling really good. My appetite is much better and my weight has stabilised. We bought Subway rolls for our lunch today (only 6 inch ones - neither of us would be able to cope with a foot-log Sub at any time!) I had tuna and a pile of salad in mine and managed to eat more than three quarters of it. I am still unable to eat meat - even chicken is unappetising most of the time - but I seem to be able to cope with fish and seafood. Last night I made Egg Foo Yung with prawns and there was enough left over for us to finish them off tonight.

Testing Day

It was a long day yesterday. I had to fast from midnight Wednesday and be at the hospital at 7 am. The hospital is in Perth City and we allowed a bit too much time to get there. Kevin dropped me off at 6.45 and I spent the next three quarters of an hour waiting. At least they had the current newspaper and I spent my time productively.

At half past seven I went into the day surgery ward and, after a toilet stop, stripped completely before donning one of those awful gowns that open down the back. Because of my clotting history a pair of TEDS (pressure stockings) were pulled over my lower legs and I was shaved in the pubic area where the catheters were to be inserted. I had a visit from a doctor to explain yet again the procedures that were to be done and that after them I was required to remain in bed under observation for four hours, so I wouldn't be leaving the hospital until 5 pm at the earliest. I rang Kevin to let him know, then read the book I had taken in with me until about 9.15 when I was wheeled off to the catheterisation lab.

The procedure involved two doctors and two nurses, an enormous quantity of dressings and other paraphenalia and three screens showing the X-rays of what was happening (thank goodness for health insurance). I had a local anesthetic injected into both sides of my groin and then a sheath was inserted into the each of the arteries, one on either side. A wire was inserted to check the direction needed and then the catheters were introduced and some contrast solution injected. One of my arteries is apparently not normal and has two branches, so they had to direct the catheter and some contrast into each in turn to find which branch fed the liver. When they were satisfied they called the nuclear physician who injected some radio-opaque inert spheres. These simulate how the actual radio active spheres will perform when injected. The main reason for this test is to check that not too many of the spheres end up in the lungs. Apparently a few are OK, too many are dangerous.

The next stop was the Radiation Laboratory for a CT scan. Moving me from one horizontal surface to another was quite a procedure, since I was not supposed to move my hips or legs at all in order not to dislodge the catheters and sheaths. I had to be rolled onto my side, a mat placed under me and I was slid from one surface to the other (three or four people required for this), then the mat removed. Before the scan more contrast was injected and I went into the scanner head first - I have always been feet first before, but I had a couple of IV bags attached to my lower parts. The catheters were removed, though the sheaths remained. Another slide from the scanner onto the trolley.

We had quite a long wait then for an orderly to come and bring a machine to help push the trolley up a long steep incline and across to the Nuclear Medicine building. Another slide and I had some more images taken. This took quite a long time - five minutes for the lungs, another five minutes for the liver and then fifteen minutes for the whole torso. Then another slide and another wait - apparently there is only one machine for this particular trolley, and it has to be used for the down incline as well. We eventually got underway and were back to Day Surgery. Final slide for the day onto a normal hospital bed.

By this time I was really in need of the toilet, so I was installed with a bed pan. I can't remember the last time I had to use one of these and it was dreadful. For a woman the position is all wrong and I really envy men their different plumbing arrangement. I finally manged to empty my bladder and the final procedure took place. The sheath into my artery was removed, a plastic disk put on top and pressure applied with a clamp for twenty minutes. After the wound site had been checked for bleeding, the procedure was repeated on the other side. A check then found that there was some seepage from the first site, so manual pressure was applied for about fifteen minutes. I was warned I would have a bruise and I have a beauty this morning.

By now it was 1.30 and time for the bed rest. I was given something to drink, and did it taste good! and some sandwiches. I managed the cheese and the egg, but couldn't eat the chicken or ham. I spent the next four hours keeping really still so the wounds weren't disturbed. I was allowed to read which made the time pass quite tolerably. I rang Kevin to pick me up at 6 and followed the discharge procedure: toilet, have wounds checked, get dressed, have wounds checked, collect discharge forms. I was downstairs by 6, but Kevin didn't get there till 6.30. He had been caught in traffic. By the time we got home I was not feeling very well and I vomited. I had a glass of Sustagen and went straight to bed, where I slept the clock around. I feel much better this morning, though I have taken a precautionary Pramin.

We will not know the test results until next week. I hope they will be sent to the oncologist by Monday afternoon when we we have an appointment, but maybe not. Apparently the meeting to discuss the previous week's tests is not till Monday. Today we are off to the Ivy Suite at noon to have the PICC line dressed.

New Treatment Underway

Yesterday we had a consultation with the radiotherapy specialist regarding the SIRT treatment. The doctor gave us almost too much information, especially since we had researched the treatment. However, we found this a pleasant change, since the oncologist is not terribly communicative and we have to question him closely to obtain any information at all.

In any case, I am booked in for the investigative portion of the procedure. I go into hospital as a day patient next Thursday and will have some spheres injected to check that they go where they are supposed to in the liver, and not into other organs such as the lungs which would be a bad thing. Then I have a CT scan to pinpoint the liver tumours. After a period of observation to check there are no adverse effects I can go home. If all goes well, then I will get the actual treatment the next week or the week after. Then I will have to stay in hospital overnight.

I am hoping that I will be able to have this treatment as it seems likely to give me quite a lot more time. The specialist also said that it may be possible to have a second dose if the tumours start up again in a year or two. I just hope it works and kills them to start with.

I am still feeling well, though I wasn't able to eat dinner (spaghetti bolognaise) last night. I think it was the smell of the meat. Instead I had stewed apple and icecream, with a little cream. When I weighed myself this morning I had gained another half kilogram, maybe. The scales are a bit erratic.

Hijacked

As you may have noticed, I follow several other cancer blogs - see the links on the left side. For the last few days I have been unable to access Jeanne's blog. Every attempt took me to a page that had nothing to do with Jeanne. Eventually I emailed her (fortunately I had had some correspondence with her a couple of months ago) and received a reply that said yes, she had been hijhacked and that she had a new site. It is assertivecancerpatient.com (no www). I have amended my own link and it connects OK to the new site, but I am including her URL in case any one else needs the new one.

I am still doing really well - no gastric nasties and a pretty good appetite. I went to Designing Women on Saturday and lasted till early afternoon. I was pretty tired by then and went and had a nap as soon as I got home. Today I have done the washing (Kevin hung it out for me - pity it rained most of the afternoon!) and read a book in the Belgariad series which I have decided to reread after ten years or so.

New Treatment

We visited the oncologist today. He seemed pleased with the overall improvement in my health. He has made an appointment with another specialist regarding the possibility of SIRT (Selective Internal Radio Therapy) treatment. This will be next Tuesday. If I am suitable for this treatment it will happen in about three weeks and I will also have some chemotherapy with a drug I haven't had before on the day before and the day after. In the meantime I have a chemo holiday - hooray!

I am feeling well and can eat quite well. I am having Sustagen between meals to keep up the calories, even though I don't want to put on too much weight. So far I seem to have gained a kilo, though my weight fluctuates from day to day. I have reasonable energy levels too. I went to the meeting of the Contemporary Quilt Group this morning before we went to the hospital. I am rather tired now, so I will go to bed straight after "Collectors" at 8pm. I want to go to the Designing Women meeting in the morning - it is the last one before the exhibition in November.

A clean plate

I finished my entire lunch just now: a slice of toast, a poached egg and some silverbeet. This is the most I have eaten for a midday meal for ages. I usually manage OK at breakfast - cereal, fruit, yoghurt or cream and full cream milk, but my appetite vanishes for the rest of the day.

Even something I fancy generally turns out to be unmanageable, like the seafood crepes I bought yesterday for last night's dinner. I ate the salad of lettuce, cucumber and tomato, but could not manage more than two mouthfuls of the crepes. I chewed the seafood, but I was unable to swallow it. Such a waste, and Kevin got a bit cross with me, but I really can't help it.

I am getting much stronger though. We went grocery shopping yesterday after I had done some sewing in the morning (ATCs for a swap) and gone down to the Post Office to send them off. I had an hour nap, then we went shopping. Today I have changed the water in the flower vases (I have been given 3 big bunches in the last few days), dug out some wadding to finish off a quilt and read the first four chapters of "Phantom of Manhattan", a sequel by Frederick Forsyth to the story of the Phantom of the Opera. Don't feel like a nap yet, so may just attempt to fix some elastic in my favourite pants. I have lost a bit more than 20 kilograms (about 50 pounds) and 9 inches off my waist, so everything just falls off. These pants have an elastic back, so I am hoping that I can make them wearable again (at least around the house) by shortening the elastic.

The oedema in my legs has gone, but I am still taking antibiotics for the painful lumpy rash on my right shin.

Some improvement

The visit to the oncologist last Friday was rather inconclusive. The tumour marker had slightly diminished, but he was not happy with my general condition - the overall tiredness, lack of appetite and weakness. So no treatment and an appointment to come back this coming Friday. He prescribed an antibiotic for a painful rash on my shin and said to continue the diuretic until the leg swelling had completely gone.

Three days later I am feeling much better. Yesterday I went shopping to buy some pants - I have lost so much weight that everything just falls off me. I have 2 big bags of clothes for the Good Sammies. I would be happy if I could maintain my present weight while becoming stronger - I certainly don't want to be as heavy as I was last November. After we had been shopping I actually felt hungry so we went to the food court at Garden City. I wasn't sure what I wanted, but I ended up with a large prawn and vegetable fritter from the Japanese stall. It wasn't quite as nice as I had hoped (it was rather greasy) but I managed to eat most of it. For dinner I felt like Tom Kha soup with prawns, but after I had prepared it I watched a TV show and when that was finished my appetite had gone. I did manage an icecream though as my meal, and I had the leftover soup for lunch today. It was good - the first spicy food I have had for months.

Legging it

My legs have somewhat diminished in size, but are still very swollen. I was prescribed penicillin and frusemide by the resident at StJoG on Saturday. I went to have my PICC line dressed and the nurse was so upset by my legs that she called the resident. It took 2 hours waiting, but at least my legs were elevated in the chemo chair!

I have been exercising and resting and I think I am getting stronger. I have an appointment with the oncologist on Friday to look at options. This may involve SIRT radiation or more chemo - hopefully a bit kinder than I have experienced to date. I am able to eat a whole lot more since I came out of hospital. Unfortunately nothing tastes all that good - but I am trying.

A good day

I have had a good day today. Juliet came and collected me and we went to a framer to get one of my pieces ready for the Designing Women exhibition in November. Then we sent off a quilt that has been selected for an Australia Wide exhibition and went to look at a contemporary quilt exhibition. I am tired, but have decided not to take a nap - I will go to bed early.

I am feeling much stronger - though I have been using my walker religiously. Still have to be careful not to sit in low chairs - we had a bit of a problem getting me up this morning from the chair I usually use to put my shoes on. My legs and feet are still very swollen, but I have a reasonable appetite and no diarrhea.

Home again

It's great to be home and I am so much better - no vomiting,no diarrhea, no medication except Clexane. I still have oedema in my legs though and I am very weak.

I found I couldn't get up from the toilet - no handy handles - so we went off to a medical supply place to buy a commode - just a frame to sit above the toilet so I could stand easily. We bought it and then happened the first of the afternoon's dramas. I decided to go down the stairs rather than the ramp. Five steps - easy. I grabbed the handrail and my knees collapsed. Rolled in a heap down the steps, grazed my knees and bumped my head. Major embarrassment - couldn't get up. With the help of some good samaritans I was finally hauled to my feet and I limped off to the car. Then it happened again - my knees collapsed as I stepped off the curb. Another call for assistance.

Got home safely and sat down in the recliner. Couldn't get up. Kevin pulled me to my feet and the knees collapsed again. He had to call his brother Graham to get me upright. I sat on a kitchen chair thereafter. I had a glass of Sustagen and went to bed about 8pm. I had a good night, though I had to get up lots to go to the toilet (but NOT diarrhea)

We have borrowed a walker and I am hanging on tight when I need to move about. NO recliner for me today - the computer chair is comfortable and manageable.

Living in Luxury …. In a Hospital?

Well, if it didn’t have a hospital bed and all the associated medical technology, my room could well be in a resort in Bali. HUGE bathroom, a fridge (for which, unfortunately, I have no use), a private balcony and an assortment of chairs for visitors, including a recliner. This, by the way, is not the usual room – I just got lucky!

When I was admitted I was in a standard single room in a general ward because the oncology ward was full. That was very pleasant but when I was moved to oncology the first room I was given definitely was not. There had been an accident a couple of days before with a colostomy bag and despite the carpet having been scrubbed four times, the room STANK! Despite my usual reluctance to cause waves, I couldn’t stand it – I felt sick for the first time in days. They attempted to disguise the smell by burning some essential oil of lavender in a burner. Better, until it was so strong it almost smelt worse than the previous/still present odour. The next morning I was moved to this room, and the carpet in the previous one was pulled up and removed. One of the nurses thanked me. She said that while they had complained, maintenance said that cleaning would be sufficient, while they knew it was not. So I felt relieved that I had helped others not to have to put up with a problem.

Today is Friday, the eighth day I have been here in hospital. I have had four different cannula insertions, each of which eventually failed because the veins collapsed due to the dehydration. I have been drinking litres of various liquids, but have had no solid food since last Thursday. I stopped vomiting after two days, but have continued to have bad diarrhea, which of course negates the liquid I am swallowing and having infused. I had an X-Ray which confirmed that I had a bowel infection (it was almost impossible to get a stool sample of course). I had a CT scan on Tuesday, and late Wednesday I got another PICC line inserted because of the problems with my veins. I didn’t want this – I had hated the previous line – but there was no choice, not only because of the collapsing veins, but because I could not tolerate the potassium mixture that I need being infused directly. It was awful – like fire in all the veins of my arm.

So this is the update. As you can tell, I am feeling much better. I am concentrating on doing as much as I can to get rid of the diarrhea and bowel infection so I can go home. And the CT scan results? Not good – the tumours in my liver are worsening. We will have some heavy decisions to make soon.

Struggling

Don't read this post if you are put off by sordid details!

It is difficult to be positive when you feel so horrible. I have had dreadful diarrhea for the last few days, plus I am throwing up without warning. No feelings of nausea, just a sudden upchuck. Last night I threw up immediately I had finished my meal (strawberries and icecream) and swallowed my first Xeloda. I waited a bit, then took the three tablets. Kept them down, then had a nasty accident from the other end when I got up to go to bed. Cleaned that up, took a Gastrostop, then threw up again. It was more than an hour since the Xeloda, so that should have dissolved.

I am sleeping lots, so I should start feeling better soon, I hope. However, the foot-hand syndrome has started again - much earlier this cycle than in the past. Lots of cream on my feet seems to be helping.

Cycle 5 Xeloda

There was a bit of good news yesterday - the CEA marker has dropped from 4400 to 3500. So I had my infusion of Oxaliplatin and Avastin and started the Xeloda again this morning.

I am having a bad time with the Oxaliplatin side effects. I have pins and needles in both my hands and up my right arm (which was the one the cannula was in) plus in the calves of both legs. These are bearable, but I am also having difficulty swallowing any liquid at all that is not at least body temperature. Any colder and my throat closes up and I find it difficult to breathe. Scary! Also a bit of a problem when it comes to trying to replenish fluids - I still have diarrhea. Have had several cups of tea - can't take warm water unflavoured. Nose drip is worse than usual, too.

I had appointments today for some more Bowen therapy for my shoulder and for another hypnotherapy session. I cancelled the Bowen therapy one because I felt so unwell, and then the hypnotherapist rang and cancelled his session. Can't say I was sorry about that.

The Food Problem

While I have been feeling a bit better, my appetite hasn't improved greatly. However on Saturday I actually ate 4 small slices of Brie and three seaweed crackers while sitting in the sun with friends. I couldn't eat anything that night, so just had a glass of Sustagen.

Yesterday I managed breakfast and a small cumquat and choc biscuit in the late morning, but couldn't face lunch. More Sustagen. By the evening I was feeling a bit more like coping with food, so I decided that I would like to try a recipe I had found in the newspaper - ricotta and potato hotcakes.

First problem was that the ricotta in the fridge was past use-by date (and in fact, definitely off) so I substituted cream cheese. Second problem was that the effort of grating and whisking etc made me extremely tired, so I had to have a little rest before doing the actual cooking. Third problem was that once the hotcakes were ready my appetite shut down abruptly. I forced myself to eat about three quarters of one - Kevin ate four.

This aversion to food is the biggest problem I am having with my treatment. I can put up with the sensitivity to cold induced by Oxaliplatin and the perpetual nose drip and snuffle I have had since chemo started. Even diarrhea and nausea are manageable problems as is hand-foot syndrome (which reoccurred two days before I finished this round of Xeloda) But I have always enjoyed my food (too much, in the past) and this present inability to eat is basically destroying the quality of life for me.

Enough whingeing. I must get the entry form off for possible inclusion of one of my textile pieces in a book to be published at the end of the year. I took the photos yesterday and had them printed as required. This morning I have burnt the images to CD, and now just need to complete the paperwork and send it off. Wish me luck.

A better day

I have been feeling much better today, possibly due to a really good (and long) night's sleep. I have not been able to fall asleep as readily as usual in the past few days, so it was really good that I fell asleep as soon as I went to bed at 10pm and slept soundly till 9 am. I haven't felt any need for a nap today, of course! No vomiting and only minor diarrhea.

My sister Dorothy used her respite time (a carer comes in to look after her husband Mick for four hours twice a week) to come and visit and we spent a lovely couple of hours sitting in the sun, knitting (crocheting in her case) and chatting. After she left I continued in the sun reading a detective novel that I found on my shelf which I hadn't read - oh dear. I am enjoying it.

I had some tomato soup at lunchtime - almost a normal serving - so I am really happy about that. I couldn't manage the croutons though. Kevin is cooking sausages with mashed potato, cabbage and gravy for tonight's meal. I quite like the thought of it, but will probably pass on the sausage. I'm very happy that I can actually contemplate eating at least some of it.

Only three more tablets (tonight's dose), then a six day chemo holiday. I am so grateful that I am feeling better. Don't know if the hypnotherapy has helped (though I have listened to one of his MP3 tapes a couple of times and tried to follow the suggestions).

Whatever, today has been better. I hope tomorrow will be too.

The visit to the hypnotherapist

I am not sure whether there will be useful results from the hypnotherapist. He certainly is a good listener and allowed me to vent about the crap I am experiencing at the moment. Then he got me to sit back in the chair, close my eyes and try to find a memory where I was happy, fulfilled and unstressed. I found this hard. He then talked at me for about 20 minutes, inviting me to think about good things, about being positive and banishing guilt, anger and anxiety. I cannot remember a lot of it, but he is going to send me a tape which we will load on my iPod so I can attempt to follow his suggestions.

When it was over, I did not feel that I had actually "gone under" and I had a tension headache. A friend has had hypnotherapy and she told me today that she is not conscious of her body at all while undergoing it. Not true for me, though I must admit I didn't feel any nausea or have stomach cramps or a need to go the toilet during the session. I will see how I go with the tape when I get it. No improvement in my appetite or eating ability today.

I went to my GP on Monday, and she was all in favour of trying the technique. She organised a Medicare service number which means that I can have a number of sessions and get back 40% of the fee from Medicare. Thanks, Deb! I am to see him again in a month's time.

Today I went to Secret Drawer, my friendship sewing/quilting group. I enjoyed myself a lot - particularly because Helen, the hostess, had a copy of the Victoria and Albert Museum's book about their exhibition - Quilts from 1700 to 2010 which was held earlier in the year. The book belonged to Helen's sister and was bought for her by her husband. What a man! It is a fabulous book and I would be tempted to buy in other circumstances. I was unable to eat any afternoon tea, though I tried , because it looked yummy.

When I got home there was a really crappy letter waiting for me. I may write about it tomorrow, or Kevin may in his blog, but it really upset me. However, after a call to the company involved, who have promised to deal with the individual concerned and offered me a apology, I am feeling a bit better. However, I am very tired so will go to bed early. I just need to eat some icecream so I can take my Xeloda. Two more days to go!

Hanging in there

just! The last three days have been pretty awful - I have been vomiting as soon as I get up, despite taking a Pramin. Couple that with diarrhea and the less said about the morning visit to the bathroom, the better.

I managed to get the quilt top finished and delivered it to the professional quilter on Friday morning, so that is one out of the way. I have three left to finish - one was almost done when I lost interest some years ago and really only needs 3-4 hours work. Another is all sandwiched and ready to go, while I plan to use my computer machine for the third one. I am hoping I will feel more energetic next week when I am off the Xeloda.

On Thursday I went and got a haircut. While my hair got really thin for a while, it has started to grow again, so I was looking a bit like Einstein - all wispy bits sticking out. Now it is all the same length and looks much better.

I have an appointment with a psychologist who also does hypnotherapy this coming Tuesday. I am hoping that he may be able to help with my complete aversion to food. I don't even need to smell or taste it at the moment - just the thought of eating makes me gag. Even my morning porridge and fruit is getting harder and harder to force down.

Only five more days before this round of Xeloda is done with, then a six day break before the next visit to the oncologist.

Not doing too well

I am having a really bad time with side effects this round. The tingling from the Oxaliplatin remains in my forearm as well as the usual finger tingling, I have constant diarrhea despite medication, I am cold all the time and I can't eat anything except porridge in the morning. The rest of the day I have smoothies and protein drinks. At least I am not vomiting!

Because I am not eating I am really tired and don't feel like doing much at all. I have spent most of the day sleeping and am feeling a bit better now, so I am going into my sewing room where I hope to finish off a quilt top that I started in 1996! Time it was off my hands. I plan to have it professionally quilted - I doubt I could cope with wrestling it through the machine.

Back on Chemo

We had a 10 am appointment with the oncologist and he reviewed the last week. He has looked at the scan and says the disease is still stable. The enlargement of the lung tumours is minute, and he is not worried about that. However, the CEA marker went up again to 4400 - twice what it was 2 weeks ago, so the Avastin alone is not doing enough to stop tumour activity. So I am back on the heavy stuff - Avastin, Xeloda and Oxaliplatin.

I start Xeloda tomorrow, but I had an infusion of the other two drugs with an early bad reaction to the Oxaliplatin. My hand hurt around the cannula and I had pain and pins and needles in my lower arm which extended up into my shoulder. Two hours now since the infusion stopped, but my arm is still bothering me and the mouth and finger tingling in response to cold is back to full strength. I'm glad I had icecream for lunch - guess it will be a while before I can eat it again.

I am not really looking forward to the next fortnight with Xeloda. Wish me luck and no side effects.

Vale Christopher Booth

Chris died peacefully yesterday. He had oesophagal cancer which spread to his bones. I have never met him because he lived in England, but I have been following his journey in his blog and I feel his death keenly. He and I were diagnosed within a day of each other and up to a month ago he seemed to be doing well. It is devastating to lose a fellow traveller, especially one so young. He was only 46. My deepest sympathy to Gillian, his wife.

A not so good day

We went to see the oncologist yesterday. The news was not the good I had hoped for. The report on the CT scan shows the liver tumours are stable, but at least one lung tumour has increased. Also my CEA is rising - 3000 now, up from 2200 a week ago. I am shattered - all the awful side effects I have been enduring seem to have been for nothing. I had an infusion of Avastin, but was told not to go back on the Xeloda.

The oncologist seems uncertain about what to do. I am to go back in a week's time, after he has had a look at the scan himself - he had only seen the report, not the actual images.

A little brightness - I have had two reasonable meals today. Food still does not taste good, but I am able to take in more than I have been able to for the past few weeks.

A good day

I am still not able to eat much, but I had a big bowl of fruit, yoghurt and full cream milk, topped with a spoonful of cereal and some cream for breakfast. I ate all of it except the cereal! Then for lunch I had some stewed apple and icecream. Ate all of that too. Tonight I intend to have another bowl of the vegetable soup I made and ate last night.

I have had a lovely day. This morning, after having my blood test in preparation for tomorrow's visit to the oncologist, I went with a friend to an art exhibition. We were too early, so we went to another gallery and enjoyed what we saw there, then came back to our intended destination. It was great. Read more on my other blog if you are interested.

This afternoon we went to visit Margaret. She seems to be holding up well after Haddon's death a few weeks ago. Then we went down to South Beach and had a little walk in the park there. It was a lovely day, warm and sunny, and a pleasant stroll. I am pretty tired now, though.

The CT Scan

I managed to mess up my appointment time - I thought it was 10.45 am when it was actually supposed to be 9.45. Fortunately they were able to slot me in as the last patient for the morning. I don't know how it happened - blame it on chemo brain that I didn't actually check the time on my appointment letter.

By the time the scan was finished they were delivering lunch to surrounding wards and it smelled so good! What a thing to say about hospital food! It smelled like savoury mince with peas and other vegetables and I thought about it all the way home. I decided a meat pie would be good, so I stopped off and bought two at a deli. Got them home and reheated, only to discover that I couldn't eat more than two fork fulls, despite a liberal dose of tomato sauce. However, it didn't go to waste - Kevin finished it off after his own pie. I had a glass of Sustagen.

Now we wait until Friday to find out what the scan showed. Please let it be good news.

Still not eating

I went to the GP this morning to get my regular prescriptions rewritten. She was also concerned about my weight loss, though she didn't have any suggestions on coping with inability to eat that I haven't already tried. She did say that eating what I could, when I could, was the best that I could do at the moment.

She took my blood pressure and it was quite low, so she has taken me off one medication and wants to evaluate the other in three weeks or so. She also did a blood sugar test and it is a bit high. Now I could have diabetes to worry about as well!

I am to have my CT scan tomorrow morning at 10.45 am, and I am not allowed to have anything but water for six hours prior, so my usual calorie loading won't happen tomorrow morning. I just hope I will be able to eat afterwards to make up for it. Plus, of course, I am hoping for some good results to justify the struggle I am having with chemo's side effects.

A longer holiday from chemo

We visited the oncologist yesterday and he listened to my chronicle of woes about the third round of Xeloda. He decided that I should have a top-up dose of Avastin, but not resume Xeloda until the results of my next CT scan become available. The CT scan is on Tuesday, and I have another appointment with him on Friday, so I am hoping for good news then. I will have been off Xeloda for two weeks when I have the scan, so I hope the nasties haven't got worse with this break.

I still cannot eat, except in the morning, so I am loading up the calories at breakfast. I quite like Sustagen, so that is my backup for the rest of the day. I have lost 5 kilos (10.5 pounds) in the past three weeks, so that is a bit of a concern. I am to see a clinical dietician when we go back next week, but I am not sure how that will help. I know the nutritional theory (I studied it at Uni and taught Food and Nutrition for many years) - it is actually being able to eat that is my problem.

Battling with food

I am finding it extremely difficult to eat. Most food is actively repulsive and if I decide I might enjoy something I can usually only manage a couple of mouthfuls.

Case in point: yesterday afternoon I thought I would enjoy an omelet aux fines herbes for my evening meal. So I went out into the garden and harvested a handful of parsley, some thyme and a couple of sage leaves. I don't have tarragon or chervil which are the classic herbs to use with the parsley, but I thought the substitutes would work. I grated a handful of pecorino cheese and chopped some proscuitto. I made Kevin's omelette first. Two eggs, lightly beaten with a little water. Lightly greased nonstick frypan. Cooked the omelet the classical way, but placed a handful of the minced herbs and most of the grated cheese on top before folding it. Garnished it with the chopped grilled proscuitto. He loved it.

Then I made mine. Only one egg, but the same except for the proscuitto which I didn't feel like. Took one mouthful and nearly gagged. I finally managed to force most of it down without incident, but it was a battle.

Today has been a little better. I had a biggish breakfast - a bowl with a couple of tablespoons of cereal, three huge strawberries and a couple of tablespoons of yoghurt with a little cream and full-cream milk. Lots of calories there. Then I had a carton of Sustagen for lunch. I have also eaten almost a whole mushroom from our newly producing farm. I might have a mushroom for dinner - we harvested three huge ones today, including the one at the back in the central cluster.

I didn't get my red car

but I got these from the dealership as a small consolation.

We decided that we really wanted a Ford Fiesta with all its features, and since a six month wait for a red automatic is not really a viable option, we opted for a silver one. We picked it up yesterday afternoon. I haven't really played with all its features, but I am totally wrapt in the Bluetooth connection to my mobile phone. No more pulling off the road to answer a call.

The hand-foot syndrome has improved enormously - I no longer have any pain in walking - but I am keeping up with applying the cream. I have had no appetite for the past two days,but have had some soup and fruit. I hope my appetite will improve as my Xeloda holiday continues.

A grotty couple of days

Wednesday my feet were so painful that walking was almost an impossibility. I decided not to take my morning dose of Xeloda. I rang the oncologist's surgery and the nurse-receptionist said that it was the best thing to do and she would tell the doctor. She rang back later and said the oncologist would ring me later in the evening. So I rested my feet until it was time to go to Haddon's funeral. It was a brief, but moving, ceremony. I wrote the basic eulogy, but our friend Dennis found many more anecdotes to relate. Afterwards we went back to Haddon and Margaret's house where I spent a couple of hours sitting down. I managed one drink, but was unable to eat anything.

After the doctor's call in the evening, when he said that I had done the right thing in stopping the Xeloda and that three days without it wouldn't make a difference and that I could expect an improvement in my feet in two to three days (all of which was a great relief to me) I went to bed without eating any dinner.

Thursday morning I vomited shortly after I got up - first time in a long time - but managed half a bowl of porridge for breakfast. Then it was off to the oral surgeon for the removal of the decayed wisdom tooth. It was done under local anaesthetic and went well. There was no bleeding, so I haven't had to use the special mouthwash. But I felt so unwell afterwards that I went to bed without any lunch for the afternoon. I slept till nearly five, when Kevin got me up because he thought I wouldn't sleep at night. I didn't feel able to eat any dinner and vomited again, but drank a glass of Sustagen about an hour later before going off to bed again.

I slept well, but vomited again in the morning. Breakfast was a couple of spoonfuls of tinned fruit. I had another session of Bowen therapy this morning. The last one certainly helped my hip/leg pain, so she concentrated today on my shoulder. It felt good by the end of the session, but it did last time too. We will see how it goes - I have another appointment next Friday morning.

When I got home there was a letter of appointment for my next CT scan. It is not till August 3rd, so I will be seeing the oncologist before it happens and we won't have any information on how effective the Xeloda has been with the tumours. Disappointing.

Reaching a century

I noticed when I logged in that this will be my 100th post - unbelievable!

We went to test drive a new car today. I have wanted a smaller car for some time and have it fixed in my mind that it must be red. The first car I ever owned was red - a Fiat 500 Bambino. I loved it dearly and it served me well. In fact, it served both of us well - I sold it to pay for our wedding. So since this will certainly be my last car, I want another red one. We were both impressed by the car we test drove - a Ford Fiesta - and decided to sign up. We knew we would have to wait for what we wanted, but felt 6 weeks wasn't too bad - we had been told there was one on the way from Germany. So we signed up and paid the deposit. Then we were told that the red car on the way had been pre-sold and that it was likely to be a very much longer wait. I was upset. We were informed there was a car in stock that was a colour that was a couple of shades darker than red and maybe I would like that colour. RED? It was a purple that was a few shades lighter than black. I hated it! Kevin saw how upset I was and told the salesman (out of my hearing) why the red was important to me. The salesman said he would do all he could, and if he couldn't get what we wanted our deposit would be refunded and the contract annulled.

Sounds magnanimous, but the consumer law here actually covers precisely this situation. If they cannot supply what we thought we were buying, we are entitled to void the contract and get back any money paid. We will wait and see what happens in the next few days.

Haddon has gone

Our friend Haddon died in hospital this morning at 1 am. He has been in hospital for three weeks (actually since the day I fell and hit my head) fighting fluid in his lungs and a urinary tract infection. We went to see him yesterday afternoon, but he was unconscious, so we have to hope he felt our love and concern through holding his hand. Haddon has been a cancer survivor for six years. He had prostate cancer which metastised to his bladder and bones. He has had numerous rounds of both chemo and radiation, but has managed an annual trip to Bali. He will be missed, especially by his wife Margaret and by his lifetime friends like Kevin who has known him since he himself was 13, nearly 60 years.

I hope I last as long.

The soreness on the outer soles of my feet is still there, but I am getting relief by frequent application of moisturing lotions and creams. The chemist gave us a range of samples to try. I recognise one - Aveena - from various web postings, but it is a lotion and a bit runny. The best one to date is one called QV which is a cream. I have also found that I have one pair of shoes - soft leather which I have had for at least ten years and which unfortunately are almost ready for the scrap heap - which are really comfortable, even more so than the sheepskin slippers. I put on the cream, then socks and shoes and my feet are comfortable all day.

The Bowan therapy seems to have made some improvement of my leg pain. Yesterday I was able to walk quite a long distance from the carpark to the hospital, and then back again,though not without some pain. There is no improvement in my shoulder. I am to have another session on Friday. Also next week I will have my decaying wisdom tooth removed, which should help in reducing mouth infections.

Side Effects

This round of chemo is making me very tired and combined with the leg/hip and shoulder pain that I have had for a couple of months now I am not at all inclined to exercise. I also think that I may be developing foot-hand syndrome as the edges of my heels are very tender and sore. I have been rubbing in a cream that I have found effective with dry hands and it relieves the soreness for a while. I am finding my sheepskin slippers to be the most comfortable footwear.

Tomorrow I am visiting a Bowen therapist. This was recommended by my GP as a possible way to relieve the shoulder and leg pain. Bowen therapy is a form of physiotherapy, but does not involve intensive massage and manipulation. Several of my friends have had Bowen therapy for a range of problems to do with bones and muscles and all agree that the therapy worked well for them.

So I hope to have a positive report tomorrow. I don't know what I am going to wear on my feet though - sheepskin slippers are not a good look!

Xeloda Cycle 3 starts tomorrow

My blood counts were fine and the liver function markers are normal, so I start Xeloda again tomorrow morning. However the CEA is up again slightly, so that is a bit of a worry. We had a look at the full report of the last CT scan. One large liver tumour has shrunk slightly, but the rest are unchanged. One of the "foci" in my lung has enlarged slightly, but it is still unclear whether I actually have tumours in the lungs.

I am to have another scan in a couple of weeks. The scans are supposed to be every 2 months, but the last one was 3 months after the previous one, so the oncologist has brought the next one forward.

I had an infusion of Avastin after my appointment. I don't usually have problems with this drug, but today I felt very cold about halfway through. I was glad I had brought a wrap. Then this evening I have had a nasty dizzy spell. Just as well I was seated at the computer or I might have fallen and ended up in emergency again!

Dara and Bernie have suggested my diarrhea may be due to dairy foods and that it might be a good idea to eliminate them from my diet. The only problem is that dairy and vegetables are the only foods I can tolerate from the taste aspect. Meat is disgusting. So I am not sure what to do.

Chemo break

I finished my second round of Xeloda last Friday, having had minimal side effects apart from tiredness, lack of appetite and the shoulder and hip pain which is still bothering me. I was happy that diarrhea didn't seem to be one of the side effects, but I have had a bit of it in the last few days.

I am feeling the cold really badly, so I am grateful that I live in an area with a mild climate. We have just had the longest cold spell since records began in 18something - ten days with minimums below 5 degrees Celsius, even a couple below zero. Yes, I can hear the sniggers from residents of Europe and North America - but we are NOT used to cold. It never snows here, except perhaps a light fall on the ranges in the very south of the State. Today it is not quite so cold because it is raining, and very welcome the rain is. It has been a very dry winter so far.

I have just been to have a blood test in preparation for tomorrow's visit to the oncologist and an infusion of Avastin if the blood counts are OK. I hope to find out exactly what the last CT scan showed, especially in regard to the lung tumours. The oncologist also said last time that he would like another scan sooner rather than later, so maybe he will put that in motion.

Another dentist

I went to visit an oral surgeon yesterday morning. The Xrays I had taken about a month ago show there is infection in my lower left wisdom tooth and at the base of a root canal filling on the lower right. There is no sign of infection at the base of the other root canal which was previously infected - big relief!

After scaring me with talk of what would be involved (procedures and COSTS) if I decided to have the the two root canals redone, he assured me that they were not essential procedures, and if they flared up antibiotics were probably all I would need. But the wisdom tooth was an urgent problem. So now I have an appointment for an extraction next month. It will be done under local anaesthetic and he has prescribed a special mouthwash that will help inhibit bleeding, so I don't need to stop Clexane. Not looking forward to it, but it is a necessity. I will get about half the cost back on my insurance.

I am still aching badly in my shoulders and hips, but have increased my intake of Panadol which is helping. I will finish this round of Xeloda tomorrow evening.

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!

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.

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.

Disappointment

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.

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.

Anniversary

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.

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.

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.

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.

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.

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.

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.