2 Months On

When people ask me how I am, I answer, Fine , still tired a lot of the time. Thats the boring truth of my situation. It is not the overwhelming, disabling fatigue that I experienced while I was on the chemo, it is simply feeling tired and needing to rest most afternoons. I know, I know, lots of people have a siesta in the afternoon and many more would like to but can't. But I don't want to rest, I want to go full speed ahead.
A few weeks ago I asked my doctor how long before this tiredness disappears and she said, up to 3 years. Damn!! It is a depressing thought for me. I know, I know, I am lucky to be alive and healthy and 14 months after the original diagnosis I have no sign of any cancers. I think my grumpiness about the need to rest is that I am worried that this will be the pattern of my life from now on. Yours in grumpiness.

I published this post and then read Doug's blog, Doug was the husband of Jane Eastman who died on June 3rd this year after a very long struggle with bowel cancer. http://dougtaro.blogspot.com/2008_06_01_archive.html
After I read a few of his posts I felt that what I had written above was petulent. This is the rollercoaster that I am. I am now sitting with my 4 year old grandson on my knee while I type one-handed. I have arranged to meet 2 of my sisters for a walk near the beach and to have coffee after.

Grandkids, a great reason to be happy.

Construction site Luca, Pippa In sink , Little Ezri

AOK

It is a chilly, sparkling Saturday morning here, I got up just after sunrise and have been sitting here sipping coffe and contemplating my future. Yesterday after the colonoscopy when the doctor came into recovery, with patient folders under his arm, looking relaxed, I knew. It was the same doctor who, a year ago, gave me the news that I had cancer. He was smiling and said , everything looks good, it's all clear, I will see you in 12 months.

So here I am thinking about seeing my grandkids grow up and hoping I get to dance at their weddings. When I think about all that I have been through and where I am now and I ask myself , was it worth all I went through, and the answer is YES! I have always said that if I had a recurrance of cancer I don't think I would do chemo again, but from where I am now, I finally get it. I finally understand that clinging to life, doing whatever it takes to see one more sunrise.

The view from my kitchen balcony.

Unexpected Rollercoaster

Even though the oncologist told me it would take months to recover my energy after the chemo, I think I had actually expected my life to jump back to normal, like a rubber band when the tension is released. There are periods of real energy now, even feelings of exhileration and joy at being alive, but that's mainly in the mornings. By mid afternoon I am trying to stop myself from lying down and having a rest. Some days I am so tired by dinner time it is a bit depressing, but most days are pretty normal.
What took me by surprise was the overwhelming rush of emotion after my final appointment with the surgeon. I had been holding it all together for the last year, through the diagnosis, the surgery, the bungled porta-cath operation and the chemo. The appointment with the surgeon was a mere formality, we drove to Westmead for him to check the scar from the operation and for him ask how I was. He told me that the operation was a success and he didn't expect to see me again. I thanked him and left. Bubbles of some strange emotion began to float to the surface, I still don't have a name for the feeling. A strange mixture of relief and apprehension, simultaneously feeling belief in the success of the operation and chemo and an unexpected fear. It was a sudden realisation that I can't really leave this all behind me, there will always be the fear that this could return, that I might have to go through that last year again. It was an echo of that day I left the hospital after the operation, the same mixture of relief and fear and I cried for ages, not able to stop and not understanding this feeling that felt like grief but I didnt know why.
Over the next few weeks as my energy returned, that complicted mix of feelings was pushed to the very back of my mind. I started back at the gym, and going for walks by the harbour, started going to movies and plays and enjoying my beautiuful grandkids, until the last few days. I am going for a colonoscopy tomorrow and all the weirdness of feelings is back.

Final Chemo

This is the penultimate day of my final chemo cycle. It has been months since my last post because I am so unsure about how I feel, everything changes minute to minute. I have become more tired each cycle and have not really recovered fully in the off chemo periods. The oncologist shortened the on chemo period and lengthened the off period so that I have been having 10 days on and 10 days off.

To say I am tired is such an understatement that I have been searching my memory for words that give all the nuances associated with this malais. I am torpid, lethargic, exhausted, listless, languid, spiritless, fatigued, drained, run-down, weary, bleary, hazy, done-in, shattered, drowsy, enervated, weakened, worn-out, bone-weary, bushed, sapped, spent, shot, fragile, light-headed, woozy, whacked, zonked, tuckered-out and in a state of ennui.
The fatigue is so all consuming that I began to doubt that energy had ever existed in me, until I found last year's wall calendar. I flicked through the pages seeing appointments for personal training at the gym, dates to meet friends to walk, theatre, bookclub, dance classes, until June. Life as I knew it changed with my diagnosis of colon cancer. As the pages turned the memories of those awful months came flooding back, the testing, operation, pain, recovery and then chemo.
A friend emailed me last week to see how I was because I hadn't updated the blog. I can't recall all I said but I do remember saying that if I had the chance to take back the last 9 months that I am not sure that I would. The idea just slipped out of my mind through my fingertips and onto the email without a lot of conscious thought. I have been mulling over those words these last few days, I told him (in essence) that what I had gained outweighed the pain and illness. In the grip of this fatigue but with the end of it in clear sight, I think its true. This is not a journey I would have chosen or would have ever imagined would be in my life, but now I am on this road it's the only one I know.

Mixed Feelings

Christmas and New Year is finally over, the plastic tree and the decorations are safely packed away and the couch has been moved back to its rightful spot. That felt like a very long holiday season and I seem to enjoy Christmas less each year. I think I would like to volunteer to work in a charity kitchen next year, it would make more sense.
I have had 3 weeks chemo free and I feel almost normal. The last chemo cycle caused more problems. I had the last IV chemo treatment, which seemed to have gone well, the same day I started the oral chemo which was to be taken for 14 days . I was aware of the beginnings of the hand foot syndrome but on day 10 of taking the oral Xeloder, I was putting the clothes on the line and I started to feel an odd mixture of sensations in my hands. It started with an intense tingling in my hands like electric shocks, my arms felt like I had been laying too long in an awkward position and had that dead flesh feeling where you have to shake your arms to get the feeling back. The chemo clinic said to stop the drugs and come see the oncologist the next day. She examined my hands and gave a pin prick test starting at my finger tips and working towards my palms. I couldn't feel the pin from the fingertips down to about one inch into the palm, and couldn't feel the pin prick on my toes. The neuropathy had worsened. I could no longer tolerate the mix of drugs I was being given so I was no longer to have the IV and will continue cautiously on the oral chemo alone. I was given 3 weeks off chemo and saw the oncologist again today.

This is the cause of the mixed feelings. I won't have to sit for 3 hours at a time receiving the IV chemo. I won't have the arm that aches for nearly a week afterwards. I'm not sure about the nausea and tiredness because I didn't know which drug was causing that. But with the oral chemo alone I don't have the best protection against cancer returning. I am drawn to the idea that what will be will be. I am so pleased at not having the heavy duty IV drugs that I am willing to take my chances.
I had never really noticed my energy levels and ability to keep going when tired or sick until I started chemo. It's different to any illness or pain or recovery from operations that I have ever experienced. It is like someone has taken out the bath plug and all your energy and coping ability drains away. But today, the last of my 3 weeks chemo free, I feel good.