Tuesday, September 22, 2015

Chemo was fun

No I am not crazy. Chemo was fun today, mostly because of the wonderful nursing staff.

We talked about all sorts of things: food, family, life experience. We sang and danced a bit. There was even a moment of improv.

And because of the Cart-a-port NO NEEDLES!!!!!!!!!!!!!!!!!!!!!!!!!

Rick was there and they included him in English, although the rest of us jabbered in French.

The machine in the photo looks simple, but it isn't. It can count the drops of poison heading into my system to destroy and lurking cancer cell. It gives information to the nurses.

We found several photos to post in our With Flying Colours Facebook group. This week it is numbers and any color. 

M-O took a couple of photos of us as well.


Ten more or thirty hours to go. In between there's other appointments, but the chemo I dreaded is 1000x better than I had imagined.

Thank you HUG.
 

I hate my veins



My veins are small and they tend to hide when approached by a needle.

Thus when they installed the port-a-cath in my chest I still ended up being stuck five time: twice to put in the antibiotics and three times to find a vein that would co-operate for the device

In the operating room, the surgeon took one look at my veins and called her boss, the big boss. 

It took twice as long and three tries, but finally it worked. 

My breast cancer team had warned me the surgeons weren't as warm and fuzzy as they were ( a reputation of surgeons that my Syrian doctor friend agrees in principle.)  

I like to be original and creative but not with my veins.

I will admit I was scared more because of my veins and needles than anything else. They wanted me at the hospital at 7 am for a 12:45 procedure. Settled in bed with a good book and a loving husband by my side helped as much as it could be helped, but still my blood pressure shot up.

On the positive side it seems the operating staff wanted to practice their English. What we ended up, which is often the case in Geneva is Franglais, or something repeated twice, once in each language. 

No matter the hard part now that it is over. I now will have the chemo inserted directly into the port-a-cath instead of trying to set records of the number of times it takes to get a vein. With ten sessions left to go, this is wonderful

No more human pin cushion. I'm turning in my tomato.








Friday, September 18, 2015

Unhappy puppy


I am one unhappy puppy.

It is one thing to get up early to make an 8:00 blood test. 

It is another to get a call asking me to come back a second time, because they had done the wrong test.

At least both times we missed the traffic. We live about 20 minutes away or an hour if it is rush hour.

The one good thing was that they were able to hit the vein the first time. On the trip back into the city I was dreading it because of the times it took four or five times. This was not any nurse's fault. It is my veins.

However, I do not want to delay the implant of the port-a-cath nor my next chemo. The faster I can go thru the program the faster I can get on with my normal life.

Rick was wonderful as usual, a calming influence. He never negates my feelings and at the same time puts them in perspective.

I am not a refugee. I am not like some of my friends in Damascus living under bombings. Despite the mix up, the care is wonderful and it will not bankrupt me thanks to the Swiss insurance system.

Now, if they would only call and tell me what time Monday, I will probably start wagging my tail

Thursday, September 17, 2015

Frustration

This has been the most frustrating day since the doctor in Argelès discovered I had lumps and needed a biopsy.

1. Plans were for a rainy day, work on the memoir I'm editing, stay indoors, enjoy looking at the rain and drinking lots of tea.

Reality. At 9:30 when I'm still in my PJs, the phone rang. The hospital wanted to know why I missed my 8:30 appointment.

The answer was simple. No one told me I had the appointment. It wasn't on any of my date sheets.

I was given a new rendez-vous at 11:30 but not what day. The call was extra frustrating because the person on the phone spoke fast and seemed to resent when I asked her to repeat something or slow down.



Mad rush trying to figure out what to do and how. The department that called didn't pick up the phone.

It did not help in searching for information my normally neat room became a disaster area. I don't do well when things aren't in their place.

Finally, I called my nurses team who were able to give me information.

2. I misplaced my pocketbook in the confusion. For one horrible moment I thought maybe it had been packed in the luggage of our two departing guests, but Rick found it before they had to unpack,
a small blessing.


The consultation was to explain what would be done on Monday when they insert the port-a-cath in my chest so they won't have to attack my veins and leave me feeling like a human pin cushion.

3. Unlike at La Maternité where everyone is helpful, the receptionist was rather nasty and I had to repeat calmly was I needed. She finally agreed to search for the doctor, who was not nasty and understood when I explained I couldn't keep an appointment that I didn't know existed.

4.  My new wig feels terrible. It itches. I finally put the one on that I had bought three years ago that I had planned to wear until my hair grew from the Oreal 66.6 to  its natural color whatever that might be. I gave up early on and the wig stayed in my closet although Rick has been playing games with it over the last few days. The old one feels fine.

We need to go back to Michel (wig maker) tomorrow when I have yet another trip to the hospital to take blood to see what can be done about the wig.

5. Since I had skipped breakfast in the rush and the cafeteria at HUG has a terrible selection of foods we decided to have a date, a nice lunch and instead of the usual restaurants we chose Port Gitane in Versoix to turn the day into something pleasant.

I used to eat there with my boss. Even in the rain the view of  the lake was beautiful. Pricey but my fish and Rick's chicken were good.

As we sat at the table, I realised that my temporary prosthesis had moved. I had my left breast looking good under my sweater, but my right had moved to the middle of my chest and up to my throat.

I excused myself to make the necessary adjustments.

Now that wasn't frustrating but more funny. Once  get my permanent prosthesis this won't happen.

I need to remind myself how lucky I am to be able to have this treatment to prevent any recurrence of the cancer, that no one is dropping a bomb on me, that I am not being herded into a camp as a refugee etc., etc., etc. I have a wonderful housemate and husband who rally around me.

And if I think about it a roaming boob is much better than banging my head against anything.

Calmness has replaced frustration.







Wednesday, September 16, 2015

Hair today, gone tomorrow

My hair was beginning to fall out and my scalp was all tingly. I decided not to wait and headed for the wig store. Part of it, I am taking control. I will not be a victim, but a fighter against any cancer cell lurking in my body.



Michel is a specialist in medical wigs. The Swiss government pays for the wig as part of their social security program.

We settled on one very close to my own hair. 

"Is it real hair?" Rick asked.

"Vegetal," Michel said. "Bamboo." However the hair is better and more manageable than my own. Good thing, It will be with me for quite a while.

"I can turn the chair so you don't have to see your head being shaved," he said.

I wanted to look and I didn't want to look. Heck, if I can stand five attempts to find a vein, I can watch the loss of my hair. It became a more feminine version of my father's face with his bald head looking back at me.

We'd seen the Marie Antoinette wig in the window. I wanted to take a picture. When I asked Michel, he said, "You can try it on," he said.

Rick and I had joked about selecting that wig. However, between the 2000 CHF price tag which is more than the system will pay for, the weight and the warmth, I decided to be more conventional.

But I can imagine grocery shopping at Migros or Manor with the wig, jeans and a sweatshirt.

My husband did a dueling blog on today https://snt150.mail.live.com/?tid=cmpFhVK7dc5RGVAGw75af68w2&fid=flinbox.

Tuesday, September 15, 2015

Life editing


'I guess this is one of these times when you have to go through what I like to call "life editing": stripping it down to the very essential with resting being a big chunk of the essential.'

These words of wisdom came from my French daughter, an exceptional young woman of no blood relation but four decades of caring make her a family member of choice, whom I don't just love but respect. What a pleasure it was watching her survive the various struggles of growing up into the talented and fine human being she is.


She was referring not just to my cancer but to her own changed life. With two small boys and and her husband's work schedules her life has changed focus on the essentials.

Likewise with my cancer. I should have been on a plane to Edinburgh for a three-week stay today. Instead I've made lamb stew, the first major cooking I've done since my first chemo and will take a walk later. Cutting the veggies, searing the meat had its own pleasures and the walks, which my husband insists on I used to call forced marches. Now I see them as treks of discovery.

Somethings like seeing an opera, a boat trip, evenings with friends all depend on doctor's appointments and energy levels. I've never edited my social life like this.

But it is all right. Each day brings me its own joyous moments... sometimes because of the editing I am even more aware of them and savor them in a way I didn't before.

She added, 'All in all, we are very busy and this is a period with little time outside work and family.'
 
I could say 'All in all, we are controlled by doctor's appointments limiting other options.'
 
When her boys are older and a sleepless night is because one of the boys is out with the car, when my treatments are finished there will be time to do other things. We hopefully will look back on all the good moments we've had during our period of life editing.
 
 

Saturday, September 12, 2015

Forced march turnabout


Rick insists I walk each day.

We've seen the difference in the brain colors before and after walking.

I really don't mind because I love exploring the area but we still refer to them as forced marches. And there are the days, when I am really tired, my attitude registers on the bottom of the enthusiasm scale, although once I'm out, it raises fast.

We normally go at the end of the day, but this morning I got him out of bed. It was a perfect late summer day with a feel of autumn.

Wandering behind the upper village the views of the Alps, a few errant sunflowers that escaped the harvest and grapes waiting for the harvest created a wonderful morning of chatting, taking photos and celebrating just being together.

We chatted with a man who had a beautiful German Shepherd, smiled at joggers, stopped at the bakery on the way home for a loaf of fresh baked bread that is wonderful with honey.

Good thing we did it in the morning. It is now 17:21 and raining.





hair savings



I really didn't mind losing my breast. After all it was out to kill me. But I am at the point my hair is supposed to fall out.

I tell myself I will save 116CHF (US$119). I won't be having that 100CHF hair cut and even though my roots are just begin to peek out, I won't bother to dye them saving another 16CHF.

If it starts to fall out, I hope it waits until Tuesday. I have a dinner tomorrow night with friends and a skin doctor appointment on Monday.

Rick wants to document the process of real hair, wig, baldness and then regular photos for the regrowth.

The wig man is waiting. I have the prescription so insurance picks up the cost of the good wig, and we are still planning on doing some cheap fun ones. In the 1960s I had many wigs and would match them to whatever I was wearing.

However, when I'm bald will I be able to sing like Sinead O'Connor, write music like Pasal Obispo and act like Yul Brynner did?


Thursday, September 10, 2015

The caretaker

Rick facebooked a man today whose wife has cancer offering encouragement.

Those who never have dealt with an on-going medical problem may not realise that the caretaker is affected as the person with whatever disease is being treated.

First, I'm extremely lucky that I have the partner (and housemate) that I do. They know what to do and what to say.

However, part of my responsibility to them is to make sure they are taken care of as well.

Rick has accompanied me on all my appointments, although most are in French. Almost in every meeting, they ask if he has questions and also if he is all right. When the sessions are all in French, I don't try to translate each thing, but limit to the ones I assume will be important. Because he can voice his concerns, I can ask the questions for him and tell him the answers.

We are given masses of written information that he can put thru a translator if he wants.

Still they show concern for him as much as they care about my white blood cell count. 

There are support groups. Only one is in English. This is not the time for him to be working on his French.

He and I have a no pussyfooting rule very useful when one of us does something dumb. Confession is good for the soul.

I can tell him that independent me is frustrated that I lack energy. I can say my mouth is sore. I can say I want better veins not to whine but as statements so he knows I'm hiding nothing. My housemate has been thru it she already knows.

We also know that when I feel good, I want our lives to go as normal as possible and they can be. I am blessed to be surrounded by people who know how to carpe diem so there is so much in the day that is not illness related. Thus a duck lunch at Marro, a DVD night, chats over tea add to the day.

However, the caretakers need taking care of too. Please remember them if you talk with a family going thru medical turmoil not just cancer but any illness.

Tuesday, September 8, 2015

White blood cells

For some reason I need to have my white blood count looked at in the Enfant Hôpital. The route to the lab is lined with wonderful paintings. By the time I crossed to La Maternité for my check up the results had been sent to my doctor.

Yup, I feel like sh-t because of low white cell count. Never fear, they had another injection for me ready to go leaving my pin cushion status in tact. The nurse doesn't like Facebook but does Skype and the conversation made me forget I was being stuck yet again.

On Friday a nurse will come to the house Friday to give me a more powerful cell builder. I picture white Legos being stacked in my bones.

Was also thrilled to learn that it will be a local anesthetic for the insertion of the box and a trip to the South of France could be possible between types of chemo. 

All good news.

At the entrance of La Maternité is a flashing sign of stars and rotating names of children born in the hospital during the last few days with a message welcoming them to the earth. It is impossible to walk by it without feeling happy. 


Sunday, September 6, 2015

Forced Marches

I don't know whether to thank J or not for telling Rick that walking got her through chemo. He has taken it seriously although his whip to get me out and moving is more done with love than the actual torture device.

However, it does give us wonderful hand-holding, picture-taking, chatting time, not that we ignore each other when we are in the house.

Here's some of the happy moments in today's hike.

Leaving the house to a beautiful view.

We always take our cameras. Two things we search for are photos for this week's theme in our Facebook With Flying Colors, shadows and reflections. We found them.
 Other things like a blue splotch on a tree just catch our eye.

Then we have developed a whole story scenario around stuffed animals. Today it is Dusty Bunny putting his moves on Honey Bunny. The whole thing goes back to my daughter's high school days, that we've picked up decades later.

I do appreciate that Rick added a pink ribbon to Honey Bunny.

I know this chemo is to keep any cancer cells that may be hiding in my body from finding a new home. I know to not be sick, I have to feel lousy. However, I will not waste this time without finding pleasure every second I can.

So take that chemo...forced march or not.

Friday, September 4, 2015

Home delivery

My husband, Rick, an American didn't believe it.

The nurse came to the house to give me a shot to build up my white blood cell count. One will come Sat., Sun., Mon., too.

"They come to the house?" he repeated.

I had to remind him he was in Switzerland where patients come before profit. The system isn't perfect with the ACA type of insurance at a much lower cost than the states but also without some needed transparency.

I am not complaining, however. My exposure is only 7000CHF, still a lot of money and more than France or the UK, but I am grateful to be here.






Wednesday, September 2, 2015

Pee politics



I didn't realize that I can sweat out some of the chemicals from chemo. Rick can pick them up thru the skin on the toilet and thru clothes being washed together.

Thus the instruction to rinse my clothes before washing them with his.

I also need to wash down the toilet seat.

We have a code. If I use the toilet, I wipe the sink and to tell him I leave his French verb chart. He's safe from chemo but NOT from French verbs.

33 hours to go

When the nurse waltzed (literally) into where I was awaiting my first chemo, the terror dissipated.

I had comforted myself with the idea that it would take only 36 hours of actual chemo over the next four months.

The staff at HUG (the Geneva teaching hospital) was suburb both in medicine and emotional support.

Tea and biscuits made it almost seem tearoom like.

There was hitch. I have veins that run and hide.

It took three nurses five tries to get the needle in my elusive veins. The previous record was four, but I know they weren't going to beat it. It wasn't their fault and I think they were more upset than I was.

Finally with lots of liquid and an arm warmer it worked. It won't happen again. I'm slated for a different method of entry.

Finally it began. One of the bags was red and had the name with the word ruby in it. It is my birthstone. It also turned my pee a pretty shade of light red. I am part of a group on Facebook that photographs certain colors for a week. It wasn't ruby this week. Too bad. Red pee photos would probably be the most original.

During the time the nurse chatted with me, giving me enough info to open my own breast advisory clinic. What a wonderful support system Geneva has. Since one in eight women here face breast cancer, this is a good thing.

It was over. My nurse and I hugged at HUG.

Another step done.



(Photos of Rusty Bunny and Rick, there to support me.)