When It Rains it Pours.

Raining cats and dog, Rain, rain go away, come again another day;

Rain on the green grass, Rain on the tree, Rain on the housetop, But not on me!

It's raining it's pouring the old man is snoring, he hit his head on the back of the bed and didnt wake up in the morning.

And of course, When it rains it pours. On the one hand I keep trying to stay positive, I keep hearing how important it is to stay positive through cancer treatment, but on the other hand, things keep going wrong.

I started this post a few weeks ago when it was raining everyday, I was feeling sorry for myself because yet another thing had gone wrong. I developed the beginnings of a side effect of xeloder, hand foot syndrome, in my feet. It feels like the bottom of your feet are burning and prickling and that there is no cushioning on the bottoms of your feet. It was difficult to walk for about 3 days. The oncology nurse told me to stop the xeloder immediately and to soak my feet every day in a tub of warm water with alpha Keri oil in and to coat the feet with bepanthan cream and put socks on while it absorbed. It worked over the next 3-4 days, though the redness remained for over a week. More than anything it was depressing. I felt that everything that could go wrong did go wrong. But 2 days ago I started my 4th chemo cycle, the IV dose went OK, even though my arm was very painful, a reminder of the the toxic drugs spreading through my veins, but when got home I massaged my essential oil mix in and slipped an old woollen leg warmer (from my 1980s gym days) onto the arm. It worked really well and I have been sleeping at night with the oils and warmer on my arm and the pain is just about gone. My xeloder dose was reduced from 6 tabs a day to 4 tabs a day. The thing that effected me however, was a woman I spoke to the chemo clinic. She was maybe 10 years older than me, she told me how she had been diagnose with bowel cancer, but it had already spread to her lymph glands and liver and she now had it in her lungs as well. Her portacath experience was similar to mine with the pain and she was left with a permanent disability in her shoulder. She had a second port inserted and had been having chemo off and on for over 2 years. She had neuropothy in her hands and had to be careful with holding containers in the kitchen because she lost feeling in her hands and often dropped things. She was so cheerful and hopeful, and looked quite well and it made me feel like a wimp. I started wondering about the way I have been feeling, I know my experience is valid and unique etc etc. but talking to this woman brought to the fore the knowledge that my discomfiture with chemo was more emotional that physical. I can cope with the physical, it is the idea of allowing myself to be pumped full of toxins just in case some of the cancer cells got into my lymphatic system or bloodstream and the fact that I have developed almost every side effect I was warned about that makes me feel so ambivalent and uncertain about the treatment. I felt so well after my recovery from the original bowel surgery but now on chemo I feel my energy draining away, having to lay in bed all day some days instead of being up preparing for Christmas. So now I feel like a wimp and have booked in to see the cancer council psychologist to try and come to terms with what I guess is a post traumatic stress episode after the portacath disaster and with my feelings about chemo.

Third Chemo Cycle

Thank you to all the friends and family for the encouraging feedback about my blog. It is easy to put your private thought out into cyberspace anonymously, but quite another thing to give friends and family access to those thoughts and feelings, so again , thank you.
I recovered quickly after the removal of the port and last week was my off chemo week. For the last four days of that week I felt better than I have since this whole saga began. Still tired but coping well. Yesterday I started my third chemo cycle, the usual process, the 3 hour IV then started on the twice a day chemo tablets. I was prepared for a week of feeling completely wiped out, but I am fine. No nausea, reasonable energy level, I am amazed I feel almost normal. Only problems are disturbed sleeping patterns, but I don't mind being an insomniac as much as sleeping for 12 hours a day, and the electric tingling in my fingers and hands. The sensitivity to cold on my hands and feet has actually increased. Compared to how I have felt the last few months this is preferable for now, but I am not sure how I would cope if I developed a permanent neuropathy, the feeling lies halfway between uncomfortable and painful, I have never felt anything like it before and is hard to describe. For now I am guardedly optimistic

5.15am

I woke today at 5.15am , my whole body clock seems to have gone haywire. I woke thinking of Holden Caulfield. I have recently re-read Catcher in the Rye and it keeps returning to my mind, perhaps because the meaning I took from it is so pertinent to my situation right now. Bear with me while I explain. The central theme of the novel is clearly existential loneliness, nothing at all to do with a longing for company, but rather a profound recognition of each human being's ultimate alone-ness which is at the core of their existence. Of course we have layers of connectedness, love and familiarity in relationships, family, friends, groups or tribes as well as nation or religion etc. But at key times in our lives we become aware of our complete and utter separateness. For example when laying on an operating table as the anesthetist injects a drug into your vein and you become completely helpless. During times of grief and loss; when a mother gives birth and the medical team takes her baby away to weigh and wash her. Your first day of school as you walk through the gate; during adolescence when you realize you must soon make your own way in the world. These examples are within the realm of a normal healthy life, I can't even imagine the sense of alone-ness for the abused and exploited of this world. So this is not me feeling sorry for myself, rather the opposite. I am sitting at my kitchen table watching the sunrise through rain drenched trees and feeling OK.
The port was removed, I was in pain after but it was quite manageable and is now getting better. The port has been sent away for testing to see if it was faulty, I will see the surgeon in the next few weeks and perhaps get some answers as to why this happened, but the anaesthetist suggested that it sounded like a nerve was stitched in with the port. Ouch, and yes that would explain the unusual amount of pain. and the difficulty I was having raising my left arm.

Which Drug is causing Which Symptom?

Suddenly, yesterday, I started to feel somewhat normal. It was so long since I had felt normal that it took me by surprise. I was only slightly tired, more a quiet Sunday afternoon calmness. No nausea or pain, except for this damn port which will come out tomorrow. So in my search for understanding about what is happening to my body I have reassessed the cause of my symptoms and have been very encouraged by my conclusions.
It feels as though the chemo tablets, Xeloder, were not the cause of my extreme tiredness, it feels as though it was the IV elaxitin. If you are not on chemo that will mean nothing, but it means that I will suffer the effects of the IV for some days after the treatment once every 3 weeks rather than every day for 14 days of the tablets. If I am right this is hugely encouraging and I am back to feeling maybe I can get through this. I am aware that today I am pulling back from engaging with this explanation, being cautious, it feels like I am making a chess move where the opponant could easily take my piece but might not for strategics reasons, I am a very small pawn in a very large game.

Port-a-Cath failure

The infection subsided as did the swelling and some of the pain. On Thursday 25th Oct, one of my twin daughters gave birth to a beautiful baby girl, while at the hospital visiting her I picked up my 3 year old grandson and felt something rip in my chest. I had a deep painful bruised feeling for several day and then noticed that the pain began to reduce markedly, I felt for the port but it wasn't where it should have been, it had moved. It had broken away from the bone where it was stitched and moved into the breast tissue where it could not be accessed. At my next chemo session the oncologist decided that the port was useless and had to be removed, my second drug had to be changed to tablets and they would have to use peripheral veins for my IV chemo. I was really angry that I had been through the insertion process, the antibiotic allergic reaction, the infection and hospitalisation to end up being able to use the port just once. She had never heard of a port dislodging like that, they are meant to be robust and for people to be able to work while having chemo.
I have started on my oral chemo, Xeloder. I am now on a 3 week cycle so I have the IV infusion over 3 hours at the clinic and go home with tablets which I take twice a day for 14 out of 21 days. Then I have one recovery week without the drugs. So the one and only positive is I don't go home with the pump around my neck. I am tired all the time, but have found that if I take the drugs at 11am and 11pm instead of breakfast and dinner I can get a few hours of energy in the mornings. I have had no other side effects so far, other than slight nausea which is manageable. The vein in my arm ached after the IV Elaxitan but I made an essential oil mixture which I massaged into the arm and it took the pain away completely.
Here is the mix, I made it up using oils to heal bruising, it worked for me:
In a base of about 20ml of carrier oil- I used sweet almond-
A few teaspoons of arnica cream, 15 drops Hypericum,
10 drops lavender, plus I added a small amount of Lasonil ointment.
I mixed it well in a small jar and massaged it well into the arm.