Not feeling so well and went to oncologist appointment. That was about all. There are days like that.
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Tags: days off, side effects
My 12 year old friend P came to visit over the weekend. I loaded up on bright colored tops at H and M (advised by John Gustafson) and she acted as fashion consultant. She made my birthday party invites on my computer. Bright girl. Then we watched Enid, a BBC production about Enid Blighton the children’s book writer. At about 4.00 I got that rush of ‘intensity of the young’ exhaustion. I took to my bed and she did her homework. By 6, her father came home and by 9 I was ready to have dinner. We watched a stupid, funny film called ’Scrudge’ with Bill Murray and she curled up in my bed and went to sleep. Sweet. I kept thinking of immunity systems. Was this sensible? These are my old lady thoughts, which should be abolished.
21 November 2009
Tags: Feelings? lots of those, immunity, tiredness
On Tube to Charing Cross to miss Opera
A night to forget (and I will)
I think this is what happened. I booked the tickets for the Gate theatre on line in a chemical fog and put the date in my diary. Went for a quick dinner with friends who are approaching 80 and do not need to be dragged around. Ran to the theatre quickly because it has open seating and confronted the box office. I had booked the tickets for the wrong night. The play was sold out. How do they know? Why can’t they wait until everyone is seated and then see who didn’t show up? NO not to be. We have your booking for next week. My friends were magnanimous and we went for a coffee. Chemo evening does not end here.
It is a lovely evening and only 8.00 and I feel physically fine (mentally I can’t say). I decide in my Chemo wisdom to find M who was taking his daughter to the ENO to see Bluebird and Rite of Spring. My plan is to either buy a ticket or see Rite of Spring OR even better to take his Rite of Spring ticket and let him go do his texts and e-mails in a nearby coffee shop. He has no interest in Rite of Spring. I take the tube to Charing Cross and get to the ENO at intermission. PERFECT. NO disaster. As soon as I arrive the guard asks for my ticket. They realize that in my coat and hat dashing to the theatre, I could not have possibly been there from the beginning. They cannot sell me a ticket for cash because the box office is closed. I could book on line, but my mobile and my technical ability could not do that in the five allotted minutes until the end of the intermission. To be honest there is no way given several hours I could have got that together. M.’s phone for the first time in his life was off. Rite of Spring was only 35 minutes so I had a walk and window shopped the bookstores and went back. Fortunately I ran into a friend who was also waiting for someone to come out. I waited and waited and text and called. No M. So I am back at home and I guess they went to dinner.
I know a very reputable oncologist who looks at me strangely when I talk about Chemo brain. But they are now doing research on it and writing books about it. Some people are even taking medication for it. I have some Ritalin, but I’m afraid to take it. It is supposed to help. I submit this evening as proof. CHEMO FOG EXISTS. I don’t think we should make any big decisions while we are having treatments. Do you? Submit evidence. Let’s advocate funding Chemo brain studies.
I now attribute this entire manic running around to a cappuccino at 8.00 at night that was not decaf. Don’t you hate that? At 2 in the morning figured that out and gave in to sleeping pills. Can’t fight caffeine. I also left my emergency (when I lose my hair) hat somewhere.
20 November 2009
Tags: brain, cancer fog., side effects
Time to get up close and personal. I was left incontinent the last time I had cancer and many times have had uncontrollable diarrhea. I think with really heavy periods that spill on white chairs in restaurants and floors of male friends’ offices (past memory) this is about as down and dirty as it gets.
WHY can we not go to the disability people and get a card for our car that says ‘disabled’ so that we can park quickly and get to a loo (bathroom). Most of my worst attacks happened when I was anxious and alone trying to park or trying to find a loo in a big store OR worse being refused the use of one. I think I know every bathroom in my neighborhood. Starbucks rates high but I have some secret ones. When they got frequent I wore that awful paper diaper underwear. I got tired of throwing out everything I had on. They put patterns on diapers now. Why can’t they make these paper underwear things more attractive?
Incontinence is more usual. No one seems to want to talk about it. Horrible: either you wear a pad or go around wet. Any pride or face saving is long gone. I have a collection of heavy trousers and coats cover it all.
Fortunately I’m having a respite from this but I think it is worth complaining about.
Here’s is what would make it easier;
- Disability badges for parking. Problem of course, when you tear out of your car and run to the loo, people look at you and think, ‘where’s the limp, the crutch, the wheelchair?’
- More women’s loos in stores.
- Boutiques that have loos.
- Department stores with women’s loos on every floor.
- Theatres with more stalls
- Movie houses where you don’t have to walk flights of steps and floors to get to loos.
- Some amazing invention, which would let you pee in your car in traffic.
- Abolishment of all plays over 1 1/2 hours without intermission. (The average bladder needs empting in 1 1/2 hours not two) (Have you seen the average age of theatre audiences…not 25 I can assure you)
I have some prescription pills that I take in emergencies. They are given to children who have trouble with bladder control. I call them my Wagner Pills and take them when I go to long operas. You can actually go four hours without peeing. Miracle. I treasure them. Also take them in countries when I traveled that had squats or toilets.
Tags: diarrhoea, disabled, incontinence, side effects
Nausea in the morning should be the name of a song or poem. Nausea in the morning, la, leads to constipation in the night, do de do. (Wrong syllables) Lots of women feel nostalgia for the morning sickness they had when they were pregnant. Perhaps they reach for the crackers or feel slightly guilty as they reach for the anti sickness pills. (They need to remind themselves that the pills won’t harm their baby anymore- cancer can take it).
An acronym needed
We need a word that covers the predominant side effects of cancer so we can communicate to each other and our oncologists quickly and efficiently:
V vomiting
C constipation
D diarrhea
N nausea
S sleeplessness
Then you go in for chemo you can say ‘I have VCDNS PLEASE HELP with this’ It will cover almost everything and save time.
THEN you can add:
Tingling of hands and feet
Pains in arms and legs
Fear
Whatever.