In the swim

I went swimming today for the first time since January, when I swam at dawn at Shark Bay in Nielsen Park, on Sydney Harbour. It was magic, but I was already so sick that when I swam I was pretty much done for the day.

Today was different. I swam at my local pool, the Annette Kellerman Acquatic centre in Marrickville. It's not as picturesque as Nielsen Park, but it's close and, with its gym and personal trainer, it has all the facilities I need to get my strength back.


I've been going to the gym for the past month or two when I was in the 'off chemo' part of the cycles, but I didn't dare to go into the pool for fear of infection from all the kiddies and who knows what else. Now that I am feeling better and believe that I am at the end of my chemo treatment (keeping fingers crossed), I thought I'd give it a go. I used to be a very strong swimmer and used to swim daily before work when my son was small, so beginning this week I am revisiting the old routine and plan to get up early to be at the Aquatic Centre by 6am. The plan is to go six days a week, alternating between the gym and the pool. In the old days I used to feel energised for the rest of the day. I want to get back to that feeling.  Right now, I feel energised, but also tired, so we shall see.

Getting off the chemo is always a tricky business. When I am on chemo I know that at certain times of the day I will be knocked off my feet and need to plan my activities around that. During the 'off period' however,  I immediately feel liberated, but my energy level and brain capacity is actually low for a couple of days and it's very tempting to do too much. It's difficult to find a balance between doing too little or too much.

One of the most frustrating thing in getting back to the gym is the peritoneal port I have had implanted in my abdomen for draining the ascites. Normally, I don't feel it and often forget it's in there, and remember only when I have my shower and feel the hard bump where it's located. Getting back to the gym, however, I quickly realised that there are certain exercises I can't do until my muscle tone returns, because the port seems to be causing pain and discomfort. Talk about difficulties in finding a balance. When I asked the Professor what types of exercises to avoid, he looked at me like I was an idiot and said firmly: EXPERIMENT! So, I am experimenting even in the pool which strokes would irritate the thing and which not. As my ascites is so much better, I was hoping to get rid of the thing, but I was told it will stay in as long as needed and was reassured that it can stay in safely for 20 years! May I live so long!

Anyway, the ugly truth is that it may need to stay in as long.  As of the last blood test I still don't know whether I will go into remission or if the chemo will just hold the cancer in check. I will have to have that chat with the professor at our next meeting in two weeks.

In the meantime, I am getting into the last stage of writing an essay for a competition, so I am doing everything I can to stay strong and focused. Going to the gym and keeping up my body and brain exercises is geared to that end.  Aside from the considerable first prize purse, I need the to know that I can still complete complex writing assignments as I need to reinvent myself (yet again) to be able to make a living. I have many alternative plans, but for now the priority is to maintain health and finish the essay.

I've been working on a longer blog entry about chemo side effects and how to deal with them. I called it The Gross Report, but I found that I really don't want to revisit that now as I move into this last stage of writing.  I need to look forward, not backward.  Nevertheless, I will finish it sometime so, if you have any difficult side effects you learned to manage positively, please let me know so I can include it.

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.