Energy blues

Conserving energy has been one of the least mentioned subjects during this cancer treatment and now that I am getting better, I push the boundaries of what is feasible. Today was no exception.

It's been almost a week from the last intravenous chemo and I have pretty much worked out that my energy seems OK in the morning and after 4-5pm when I take the chemo tablets. So, yesterday I made arrangements to have some of my things brought home from storage and downsize the storage unit I rent until I find a friend with a large garage and/or get rid of the stuff I still have stored. The man said he would meet me there 8am sharp. 

I got there a bit early and went through the boxes to see what I want taken home. The man was a bit late and I had time to peruse at my leisure. And when he arrived, he was charming, he was energetic, he was the exact opposite of how I was feeling. A breath of fresh air. 'No worries' - says he and starts to lift the heavy boxes. Me, I am wilting. My head is woozy and I start to worry how I am going to drive home. I realised I should have asked someone to come with me. I start to dial and message strong men - young and old - who may be around to help. Nope. Only answering machines. What to do? I leave the young man to do his thing and sit down in the office. Waiting. Waiting for what?

The mobile rings. My rescuer. My knight in shining armour for today. By this time I am ready to throw everything out and when the young man says he can take things to recycle, I just wave a royal wave. Do it! It's only later I discover I waved away a few things I wanted to keep. Mea Culpa.

We make it home safe, I pay, my knights leave.  I crash on the bed. My phone starts ringing. My brother in Florida. Can you Skype?  My mobile phone buzzes a message. Mom, can you Skype? No guys, I am pooped. I can't move. Don't bother me. I take my cyclophosphamide pills and wish I could go to sleep. No way. My brain is alive, my body is walkabout. 

It's 2pm now (4hours later) and I wonder if there's anything on the internet about how to conserve your energy while you are undergoing chemotherapy. Sure there is. Platitudes. 'Save your energy, conserve your energy'. But how? I can't just sit around doing nothing. And nobody seems to be expanding on the 'how?' Or at least I couldn't find anything.

Well, there are ways. Get your family and friends surround you with love and attention. If nobody is physically there, call them, email them, tweet them. They would love to hear from you - either to entertain you while you are comfortably wilting on your bed, or to offer to come around and make you some tea or coffee. Only accept personal appearance from people you know well, for whom you don't have to put on an act and with whom you are comfortable just being quiet or reading side by side, or watching TV. The others take up too much energy.

What else? We are having an election campaign here in Australia. It's deafeningly boring, or rather disheartening. There's not much difference between the major parties, both have some outstandingly stupid policies. I won't say no more. We have compulsory voting here, so we have to vote. A conundrum. So, for the past week I have deliberately not watched the news, just caught up once a day on the web. Big conservation of energy!

Best of all, have fun. Watch funny movies and laugh a lot with your loved ones. Even if it's just about your cancer. Big easing of tensions and worry all around. Since my son lives overseas, one of my solutions is to txt him, especially at night when everyone around me is asleep, that I am feeling down and need a joke. I have to say that I get some doozies. During daytime, I've been know to call friends with the same request and we end up with big guffaws. Yes, there's laughter in cancer. It's the best way to conserve energy, the best medicine of all (and if you really want to laugh, read this medical description of what 'humour therapy' can do for you)!

So far, so good

D-day arrived three days ago. I started to take the Cyclophosphamide pills. This is one of the cytotoxic agents that I have to take to kill the cancer cells. The other two are Methotrexate and 5FU. These are given as 'bolus injections' at the Cancer Centre. The treatment is in cycles of three weeks, as follows:
Week 1 - Methotraxate+5FCU+Cyclophosphamide 4 pills taken orally daily for 14 days.
Week 2 - 5FU+continue Cyclophosphamide.
Week 3 - rest - no cytotoxic agents.

At least, that was the original plan. With the bad reaction I had to Cycle 1, the protocol has been changed. I have to take only three pills for 14 days.  But that will end on June 4th, the day I start Cycle 2, so I am not quite sure just how it's been adjusted. I forgot to ask.

There's just too many things to think about and my mind keeps wondering off the cancer treatment. This time I made the decision not to check on side effects until I don't feel well. Last time I checked the internet when I was in treatment, I found the details of the side effects so frightening that I don't want to face that fear again. My view at the moment is that one has to trust one's team. I do. So, I just go with the flow as far as the medications are concerned.

Mind you, I feel I am a walking pharmacy at the moment.

Normally, I take two types of medication: one for thyroid (which they took out in 1993) and one for blood pressure. Now?  Let me see.  I don't think I'll bore you with all the names, but enough to say that there are two different pills for the stomach, the Cyclophosphamide, and now antibiotics for cellulitis that developed around the peritoneal port they put in while I was in hospital.  This makes drainage a breeze, as I discovered last Tuesday, when I went in to get the inflammation around the port checked and lovely Keith (head of the chemo unit) took one look at me and said: 'It's cellulitis. It happens, so we'll give you antibiotics and, I think we'll drain you too'.

Now, lest you think it's all gloom and doom in the cancer world, let me tell you what happened while I was being drained. First of all, it was really easy. Without the port one would have to wait to go down to ultrasound for the radiologist to check where is the best place for the doctor to insert the drainage tube. The tech marks the place on the abdomen and the patient can't move at all until the drainage tube is inserted by the doctor upstairs in the 'chemo lounge' or the ward. With my 'port' the chemo nurse simply inserted the needle attached to the drainage tube and voila, the fluid was flowing. No waiting.

While the nurse was doing this, a new patient arrived beyond the curtain and I heard, what I thought was a familiar  voice. I thought it was Martha, one of the patients I met 3-4 weeks ago when I first went into emergency to be drained and stayed for a week. She is Greek, with a large, wonderful family. We clicked and decided to keep in touch. I told the nurse that I thought I knew the patient, but didn't want to bother her.  A minute later, a voice comes over the partition: 'Elizabeth, is that you?'  Sure enough, it was Martha.  Last time we talked 3-4 weeks ago was when her mother and sister arrived from Greece. She came to be drained too. With her were her sister, , her husband and her daughter. We had a wonderful, laughter filled afternoon, while I was being drained (it takes a couple of hours) and Martha, who has no 'port', was waiting to be taken to radiology for the ultrasound. When she was gone, the 'visit' countinued with her family.

There are two people I decided to keep in touch with from my two hospital stays in April and May.  Both are amazing women with far more advanced cancers than I have. I am in awe of their resilience in the face of their suffering. I am also delighted to know them, because they are interesting and fun. And it is really important to have normalcy while you go through this cancer journey. Having fun and games is definitely on the agenda. I am really looking forward to having more energy, when I can visit Martha and Marie and play scrabble and exchange jokes. Or, just simply moan together and laugh about it, without being told how brave we are. Laughter is medicine. You have to keep your sense of humour or you may as well just give up. For me, giving up is not an option, so I'll stick to laughter, which comes easily now as I have had no bad side effects yet from the Cyclophosphamide. May it continue so.