My Unplanned Sabbatical

A journey with follicular lymphoma

Archive for the month “June, 2012”

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Today is worse than yesterday.

Not all that happy with this trend. I continue to be horizontal for the most part of the day and night. 7 days post chemo and was expecting to have recovered more. I am ok with it, I have no choice. The fatigue is reaching new levels. I said to a friend sometimes I feel catatonic. All I do is lay on my back and stare at the ceiling and the hours just slip by.

I have no real energy for reading, TV or people. I just sleep, rest and stare.

I walked around the block with Petra and the dog this afternoon and then I slipped quickly back into bed. Dog is loving it.

The girls have been amazing. So caring. They each take turns tending to what I may need. Really proud of how they are holding up. They slink into my room for quick quiet chats before returning to the more raucous household. Petra is doing OK as well but I can see its taking a toll. Tough for her. Like living with a ghost for 1/2 of the month, a recovering invalid for a week and then manic depressive off his lithium for the last week. I so love that last week.

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Slightly worse

A bit of a punishing day. Woke with a glimmer of better things to come but quickly slipped back into not a great place.

Went for a short walk with the dog. That’s about it.

Same same

Not much to report on. In bed most of the day. Read a bit. Watched a few TED talks, took all my medication, washed and went outside for a brief visit and collect girls from a play.

Back in bed. Life chugs along.

Hawthorn won. Dog happy.

A bit worse

Last night and today have been pretty poor. I have remained in bed. Last night I dreamed vividly a large tree was growing out of my abdomen! The pain and cramps were terrible and that dream recurring.

I am taking all my drugs.

The dog and I have basically slept all day. I wake to find food and fluid by my bed. Petra and the girls have been out all day at breakfast, sport, various catch ups and now an early dinner.

Wanting to feel better tomorrow so I can do a coffee catch up to! I need to drag myself out of this house tomorrow. As much as I love the dog it’s a one way conversation.

Shades of the 18th of May

Had to happen. Slipped off the cliff today into the usual processing you position. At least I am consistent.

Terrible day. In bed, dealing with the body heat, the head aches, sore membranes, nausea, irritability, aching veins, etc. not much fun. Very heavy fatigue. Collecting the mail was a major mental and physical effort.

Trying to read, sleep, drink and eat a bit. Just have to let it pass through me, again.

Hope tomorrow is better. Can’t see me making the girls sport or much else.

Manageable day

Today has been manageable.

I have kept my drugs up and drank heaps of fluids to help flush this through. I have been feeling not to bad. Body is hot as my immune system fires up under the influence of the rituximab. I like this fiery feeling, it’s the body working hard to destroy the tumors. Not passive.

Nausea under control at the moment which is a bonus. Veins in my arms are really sore and they have just about had it. One more cycle left in them. They have “chorded”. Hard and sore and feel like chord. Not good.

Have been eating heaps of fresh fruit and vegetables and this helps with other bodily functions.

I worked a little till midday and then relaxed all afternoon reading and listening to music. Had a Nanna nap around 4 pm before family dinner. Dinner was quiet and relaxed. We listened to music, sang a bit and talked. Nice.

In bed early tonight and watching the football. Hoping for a similar day tomorrow.

Round 5 in the bag

All done. Feeling ok but I know the drill, tonight should be ok.

Last chemo session scheduled for 12 July and then that is it! I am looking forward to the month break and hopefully 2 weeks of feeling good.

Time to try and go with the flow for while. Now where is that dog?

Day one, round five

Day one round five is over.

I did not feel great this morning before I started. Like I was pre flu or similar. Nothing unusual to report.

Some more positive news from the specialist. She came to visit me in the chair and do a consult and said she could not have hoped for more. Response to date is as good as she has seen. She told me she is very confident we will put this cancer “to sleep”.

That lifted my spirits.

I am feeling tired and a bit spaced out. Body burning a little and stomach churning a bit.

Home now and will relax tonight before this cycle is completed tomorrow.

The pre game ritual

Pretty low key day enjoying my own company and the dog. Petra and Siena went shopping. Lily and Alessia were at the sleep over and the house was mine.

I had to work and complete something before I slip into the zone tomorrow so I did that till about 3ish. I went for a walk with the dog and then exercised hard for an hour or so. My last bash for a while. Felt good and strong although I have not exercised enough this month.

Family reunited around 4 ish. We had an early dinner and a few laughs. Siena modeled her shopping with great style and took great delight in telling all how much “mum spent on make up”. All pretty harmless.

I have a process the night before chemo where I make sure all our bills are paid, I pack my bag, charge the ipads, iphones, put the girls to bed and drink heaps of water. Well I try and do that all day.

A quiet night planned tonight. Will do my best to think of a witty tweet for Q&A. Julia Gillard on tonight so it should be interesting!

Not looking forward to the next couple of days then the week or so that follows at all!! I know only two to go.

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We left Merricks this morning to celebrate my mothers birthday at the Tea House in the city. It was good to get together and the food was excellent.

The rest of the day was low key. The twins have a sleep over tonight at friends and Siena and I went to the movies. Petra is not feeling great with the flu threatening to take hold and stayed home to rest.

Watched the end of the Eddie Mabo story on TV tonight which was worthwhile. Staying up to watch the French open final.

Clearly I am more sensitive to this but I have noticed a reasonable number of ads on the TV recently dealing with cancer. There is one where a father waits in the Drs waiting room saying to himself “please not cancer” and another of a young mother washing her baby in the bath wishing she could live long enough to see her child grow. This is on ovarian cancer. I was watching TV with the twins over the weekend when the first ad I described came on again. Alessia looked at me with a knowing look of compassion and fear. I told her mine was a better cancer, not lung cancer. She smiled. Not sure I convinced her. Hard.

Anyway, watching the Eddie Mabo movie tonight and he to passed away from cancer. It’s in our face a bit.

It is proving difficult to always deal with it on my terms.

Anyway, this week will see no. 5 come and go and there will only be one more to go. I have been starting to contemplate the what next, but that still appears a little uncertain at the moment so I will let that rest for a while longer.

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