Friday, June 24, 2011

Thank heavens for....

... Wimbledon tennis and jigsaws!

Yesterday I had my next session of chemotherapy poured into my system via a drip. It means a 4 hour session at the Cancer clinic with other patients. I take my knitting (hot water bottle cover this time) my crosswords and my reading. The only thing I get done really is my knitting because you can knit while you talk. It's a very social occasion. Most people have somebody with them, so the numbers are often as high as about 12. Much stimulating conversation is held - and mostly NOT about cancer. It's an enjoyable morning - nothing hurts :)

Back to the 'thank heavens for'. I have one of these session every 3 weeks. And I take chemo tablets for 2 of those 3 weeks. I had forgotten - probably because of what has occurred since the last session - that for the first few nights I can't sleep. It doesn't matter how weary I feel, after I've gone through the 'going to bed' rituals I settle in under my doona and lie wide awake................

Fortunately Wimbledon tennis is on the tele until the wee small hours of the morning and a dear friend very kindly dropped a new jigsaw in for me the other day. So the coffee table has surrendered its regular load and is now spread with a circular 500 piece jigsaw - the scene of a 50's era petrol station/mechanic shop with lots of colours - and not much plain blue sky!!!

The pins and needles in the hands are back, so I'm typing this with gloves on - as soon as my hands are exposed to the cold they are very painful. And my throat seizes up in the cold air and I have to gasp for breath. Gave my walking group a fright this morning when I arrived at our regular coffee destination and was gasping furiously. I think they were scared, but I wasn't. I know it only lasts about half a minute. And now that I've been reminded about it happening - I'll be more careful about how early I go outside for heavy breathing :)

I've been having days and days of headaches lately. Going to sleep with it and waking up with it :( The oncologist asked me if I wanted to have a brain scan. I told him 'No'. I believe it's mechanical - probably tension - so I am seeing a physiotherapist. He agrees with me - that it's mechanical - and says it's probably a result of the change in my shoulder from the frozen shoulder I had between 2008-2010. He is treating me to tell the muscles to go back to do what they are supposed to do and has given me some exercises to do - and there will be more. I'm pleased to report that I've had the first 2 headache-free days, yesterday and today. I'm amazed at how much better it makes me feel about EVERYTHING. Long may it last.

Making tentative plans to go away in the Hopemobile for a couple of weeks. Still just plans, so it might not happen. Watch this space.

Saturday 25 June. 4.30pm

Sunday, June 19, 2011


This morning the oncologist called to tell me that the tumour markers are down further, according to last Friday's blood test. Yippee! Justification for continuing on this ghastly chemo regime.

Another blood test on Thursday, before I see him again, will tell a new story - or more of the same. Will I have much blood left after all this? :-)

Still walking barefoot, beating my chest, rubbing my spleen and liver areas and massaging my ears. And, of course, taking the herbal tablets. Something's doing some good.

Monday 20 June @ 4.15pm

Friday, June 17, 2011

Back on chemo

Quick update

  • feeling much better and getting my strength back
  • had my blood test this morning
  • couldn't speak to the oncologist but was told by his clerical assistant that he said to resume taking the Xeloda chemotherapy tablets
  • started taking them tonight - for the next 14 days
  • have resumed my barefoot walking on the road now that I'm feeling better and the weather has improved
  • still beating my chest, rubbing my spleen and liver area and massaging my ears - according to Dr. Chen's directions
I'm hoping that when I see the report from today's blood test, the tumour markers have reduced further

Nothing planned for the weekend - so I might get back to my reading.

Friday 17 June 8.50pm

Tuesday, June 14, 2011

a tiny bit of light

Diarrhoea has gone, appetite is back, strength is returning and I think I'll live a bit longer. That's something I didn't event want to do late last week.

Today, as instructed, I called the oncologist to get directions for the next move. He wanted to see me before he gave any instructions. That made me nervous. So I went to see him. He chided me for 'overdosing' on the chemotherapy. Now, I think I could win a legal argument that I wasn't the only one at fault on that score, but I think I'll save my energy for my health, rather than fighting legal battles.

He recommended that I have a blood test this Friday, call him the same day for the results, and if they are OK, then resume taking the chemotherapy tablets for the next 2 weeks.

BUT THE GOOD NEWS IS........................ that the tumour markers are going down!!! The blood test I had on 2 June show the markers decreasing by about 20%. I hadn't seen these results before, and nobody told me!!! That's very good news. My GP told me, during the week, that the fact that I no longer need any pain relief is an indication that the tumours are shrinking. I was reluctant to believe her. But now I think - maybe she was right.

Anyway - a blood test on Friday will tell a new story. It will be 15 days after the previous blood test, so there may be even more progress on the tumour markers.

It is now 7pm on Tuesday 14 June. It's cold, rainy, windy, dark - horrible. Take me to a tropical island :)

Sunday, June 12, 2011

One week on and still riding it through

and sh****ng through the 'eye of a needle' :(

Being beautifully cared for by special friends who bring food, prepare it, serve it, clean up afterwards, change bed linen, take washing away, bring crosswords and newspapers and books, entertain me - and bully me to remember to take enough fluids and food to keep me going.

Today is a public holiday (Monday 13 June - Queen's Birthday). Tomorrow I consult the oncology people to see what the next step is. They told me to go to the hospital if I was in trouble over the long weekend. Fortunatley that has not been necessary.

More later

Saturday, June 11, 2011

Boo Hoo

Today (Saturday 11 June) I was to officiate at Kellie and Sean's wedding at Lavender Bay at 3pm. I couldn't because I have been laid low for the past week with gastro. Whew! Is it awful!!!!

Since I last wrote I spent a beaut couple of days in the Hopemobile around the Pittwater area. The night's were cold, but the days were warm and sunny if you stayed out of the wind. ALL OK.

Unfortunately on the second night, when I was camped near Palm Beach, my innards started to rumble and the gastro set in. Nothing for it, of course, than to set course for home very quickly. There's no place like home when things aren't right.

And I've had to stay close to home all week - apart from visits to the doctor and a quick trip to the local library.

Consultation with those who know informs me that it is my reaction to this new chemo regime. I have been given medication, had blood tests, told what to eat and drink (keeping the fluids, salt and sugar up) and - basically told that I have to ride it through.

It started on Tuesday night - it's now Saturday and I'm still suffering. Yuk :( Hence I had to call my friend, Denise, who is also a celebrant, and ask her to perform the wedding ceremony for me today.

I am anxiously waiting at home, with the phone nearby, to hear that it all went well. Whew! She called and all went well.

Bye for now.

Friday, June 3, 2011

Claiming Chemo Brain!

Well, this morning I duly fronted up at the day hospital for my next infusion. The appointment was for 11am, so I went out to find my rough road on which to torture my bare feet. Found one not so far from home - by car. The people driving and walking their dogs to the beach along the street averted their eyes as I approached, so I just chirped 'good morning' and kept going. I don't think I mentioned that I have to pat my tummy below the navel - and my bottom, with alternate hands with each step I take. That might help you understand why the eyes were averted.

I've been pounding my chest, massaging my ears and rubbing my liver and spleen ever since.

While I was driving back home from this exhilirating morning exercise (at least the sun was shining), I received a call asking if I could come early for my treatment. As I had left the day completely free, except for food shopping which could wait 'til after the treatment, I agreed to go in early. I went home and had breakfast, took relevant tablets, showered and got myself there at 10.15am. Not bad, I thought.

I settled myself in on one of the new purple lazyboy chairs with swivel table for cuppas and odds and ends. The delightful nurse hooked me up and I got out my book to read.

The nurse asked me something about the Xeloda tablets I was taking and if I had taken them for 14 days after the last infusion. Disaster, dismay, tears (yes, I lost it momentarily). I told her that no-one had told me to take them for 14 days and then have 7 days free before the next infusion! Went she commented that I had been on this treatment before and thought I would remember, I reminded her that that was way back in 2007-8, and that I had been through an amazing amount of stuff since then and didn't actually recall that detail. I'm claiming chemo brain :)

She went away into a huddle with the NUM and came back to tell me not to take any Xeloda tablets for the next week. Instead of having my week free of it at the end of the 3 week cycle, I should have it at the beginning.

So, just a note to self - try to ask every question you can when going on to a new/old treamtent. Don't ASSume anything.

Note to nursing staff - don't ASSume that the patient knows ANYTHING. They'll tell you if they do.

May I say that I love all the staff at the day hopsital. They do a great job, create a stress-free atmosphere and I couldn't imagine being cared for by any better nurses.

So.... I have a few days free of any medical or social or family commitments and the Hopemobile is coming out of its carport. Kur-ring-gai National Park, Pittwater and Palm Beach - here we come for 3 days - Sunday to Tuesday. I'll take pics.

After my treatment today I did the food shopping, went out with friends for a cuppa at the golf club, called in to First Friday drinks with old rugby club mates, had a Vietnamese takeaway meal with a great friend in front of the heater at home while we finshed the cryptic crossword. Am in bed now and can't sleep. It happens every time - first 2 nights after the chemo infusion. I wish I could remember each time. I'm claiming chemo brain.

Right now it's 12.45am on Saturday 4 June 2011 and I'll probably fall asleep just as I want to get up to meet my walking group for a cuppa at 8am, after their walk. .... never in control :( but trying :)

Wednesday, June 1, 2011

Not good news

Well, I've had the blood test and seen the oncologist for the results. The good news is that the liver function is on the improve :)

Unfortunately, the not-so-good news is that the tumour marker is increasing in its measurement, which means there is more cancer activity in my body. Disappointing - and a bit scary :(

The oncologist suggests that I continue with the chemo for one more round. An effect is not often seen until after 2 rounds. So ....... I go back to the day hospital on Friday morning to have another infusion and continue taking Xeloda tablets for the next 3 weeks.

At that time I'll have another blood test and if the result is as it was this week, I will have another PET scan to get the real picture.

Today (Wednesday) I visited the Chinese herbal doctor/acupuncturist. He looked at my blood test results as well as taking my pulse and looking at the colour of my tongue. He was not pleased. I also told him about the more frequent headaches I have been suffering lately. He gave me a series of exercises to do as often as possible. They are the 'do-it-at-home' acupuncture to stimulate the T-cells (which fight cancer) and boost the immune system.

So, if you see me beating my chest, massaging my ears , rubbing my spleen and liver areas and walking barefoot on rough roads............... please indulge me..... you might even like to join me :). Dr. Chen assures me that if I follow his instructions explicitly, I will have a better result with the next blood test. Certainly hope so.

In the meantime, I'm keeping my mind busy with

1.plans for a weekend of activities in Sydney with friends - which includes conducting a wedding at Lavender Bay...and
2. a week's holiday on Norfolk Island in August - with the same very special friends whose support and love have kept me going for the past 5 years - along with lots of family and friends, both near and far.

My son, Tim, is off tomorrow for a 2 week holiday in Thailand. My daughter, Nikki, is preparing herself for climbing Mt. Kilimanjaro in September. And my grandson, Zeke, has just earned his very first colour belt in Karate. We are all so proud of him and he is bursting with pride.

Today is 1 June. I'm so glad that the coldest May in 40 years is behind us.