Today is the end of chemo cycle 1. I survived. Go me! My prize for survival of cycle 1 however is promotion to cycle 2 that begins tomorrow. The last day of the cycle is bloodwork, and so off to the hospital I went this morning to see how this new port works. And guess what? The hospital vampire I saw today said that they didn’t do port bloodwork in their department. What? Guess what I will be discussing with the chemo nurse tomorrow! Thankfully, this morning’s vampire took time to find a viable vein, warmed it up, and managed to get blood first time. Impressive! Sometimes I feel that I should carry “well done” stickers in my bag to give to the vampires who don’t need a second (or more) attempt!
Today I feel emotionally fragile. This is not a good week for me. Not only do I have chemo tomorrow and Friday, but it is the one year anniversary for losing my sister. Exactly one year ago today I found Pauline unconscious in her flat, resulting in her being admitted to the critical care hospital. A year ago tomorrow would be her 49th birthday. A year ago on Friday she was put onto life support. A year ago on Saturday we lost her. To be honest, I remain far more sad about this than I do my own situation. I miss her so much. We never got along very well in our younger days, but life has a way of blurring the black-and-white differences and in the past few years we would chat on messenger throughout the day, most days. So many times something happens and I go to open her chat box and then am overcome with an emptiness as reality reminds me, she’s not there anymore. My life is emptier without having her to chat to, laugh with, and yes, squabble with.
So, it is with a heavy heart that I approach chemo cycle 2 tomorrow. On the plus side, I’m organised. I have ordered my comfort food (Heinz Veggie soup, and Cadbury’s Double Decker bars) from the British Corner shop online, and I have what I hope is an easy craft kit to keep me distracted from the serious nausea that was by far the longest lasting and most severe of the side-effects in cycle one. I know some of you will be curious to know what I’m going to make so I will say it’s an Easter project using really pretty felt. I think it’s cute – hopefully my idea of cute does not translate into my darling hubby’s idea of tacky! It’s getting made anyway cos I like it! LOL If I manage to create something in the next few days, I’ll post a photo on my next update.
Meanwhile, I hope that all of you are having a wonderful day, and thank you for your continued support.
If you know me, and know me well, you know that I am somewhat deficient in social graces. Oh sure, I can put on a mask and turn in an Oscar winning performance, but deep down the real me is the most extreme introvert you will ever meet. Really! Because of this, it has been overwhelming to read the comments of love and caring on my Facebook update about my colon cancer diagnosis. I don’t know what I expected, other than to make sure that should something happen, family/friends couldn’t say “why didn’t we know?”. I didn’t want Mikael to be in the same position that I was in last year when Pauline (my sister) died, and I had to inform her friends. In Pauline’s situation there was no time for a warning shot across the bow, no time to let people know she was in hospital never mind in a critical condition. It happened too fast. In my case, I had a choice to keep it hidden, or to come clean and let people know what was going on. I chose to learn from Pauline’s situation and tell all.
What I didn’t expect was the amount of love and caring support that I have experienced from family and friends around the world. I am so blessed to have such a large support group and if positive energy alone was enough to heal me, I would be the healthiest person on the planet right now. Seriously. As it is, I must be one of the world’s luckiest people to have such friendship. You have no idea how many times I would read a message over that week, and emotional tears would fall onto my keyboard.
As I said, I’m an introvert, I’m not a social animal at all, but as I read the messages on FB I was aware of the different groups of friends who have touched my life, most of you going back 18 years or more (pre-dating FB!). Family (blood and otherwise) who are always with me in spirit, friends I made working at the University in the UK (which feels like forever ago!), the MAJIC girls who were all trying to be first-time mommas at the same time back in 1999, the Momwriters with whom I shared Jake’s traumatic birth story in 2000, and the friends I have made here on Facebook through the various interests I have. It occurs to me that these were all social networks when social networking wasn’t a part of our everyday dialogue. It occurs to me that perhaps I’m not as insular as I had thought. It also occurs to me that as Sally Fields said “You like me!” I didn’t know that. I thank you for your friendship and your support throughout the various stages of my life, and especially now as I face this challenge. I no longer feel so alone, and I thank each of you for your continued friendship. I have no words to tell you how much that means to me, so from the bottom of this introvert’s heart I will just say a belated, but simple, THANK YOU.
Thought I should maybe say something on how my chemo is going to be structured. I am on a 14-day cycle. Day 1 and Day 2 are chemo-input days, then days 3-13 are rest and recovery days, with day 14 being visit-the-vampire days to check that my blood count has redeemed itself back to a normal value ready for the new chemo cycle beginning the following day. The current schedule takes me up until the middle of May.
I am now on day 5 of cycle 1 (C1:D5). The side effects haven’t been as bad as I anticipated so far, although I have to confess that I saw very little of Saturday, having slept most of the day and night. I remember reading somewhere once that your brain can’t cope with two different areas of pain at the same time, so if you want to distract yourself from one pain, you should find another. This would appear to be true because far worse than the side effects (so far this cycle) has been the pain and inconvenience caused by the surgical procedure I had to undergo in order to put a port device into my chest that will allow the hospital to give the chemo shots, and take blood, without needing to play hide-and-seek with my incredibly shy veins. Being incapacitated down my right arm/hand while this implant heals over is no joke, my left hand has no idea what to do with the mouse buttons and apparently is in no hurry to learn (old dog, new tricks syndrome perhaps?)! Thankfully, the pain from this is healing and I am now able to type a bit, if not yet stitch, once again with my right hand.
Despite the pain and fatigue for days 1-3 of the first cycle, yesterday I did notice that I was able to do something. Not much, but something. Something more than I have been able to do for months because I just haven’t had the energy to think about doing something never mind actually doing it. I want to stitch. So much fabric, so little time (even if I lived until I was 90 there wouldn’t be enough time!) Yesterday however I was focused enough to get a book out and think about making something. Today, I am even considering venturing into dressmaking having seen a dress that is so me on the stitching tv channel this morning. This provides me with as much optimism as to how the treatment may positively affect my life status, as it will fill Mikael with dread as to how the same activity will negatively affect the bank balance! Hahaha Oh how I adore sewingquarter.com!
Today I had my first meeting with my Oncologist. She didn’t tell me much that I hadn’t already read in my patient notes (here in Sweden we can access our patient records online), but she did give information as to how things were going to proceed. As we knew from the patient notes, surgery was currently not an option for me so it will be chemotherapy, plus probably radiation. If things with the chemo/radiation go well, then perhaps surgery will be put back on the table (pun intended!).
So chemo begins 8am on Thursday morning with a small operation to insert a port on my chest into which they will insert the drugs, and out of which they will be able to draw blood – this is a good thing because I have very shy veins as even a simple blood test can be a lengthy, frustrating procedure (3 nurses and 5 failed attempts to get blood today before they hit a slow but co-operative spot). The plan is that I will have 2-week cycles. Week one will have two consecutive days of chemo, and week two will be a rest week to allow the body to recover from week one. The plan is for this to go on for about three months after which they will do another MRI and see how the cancer is reacting to the treatment and then they will decide what happens as a result of that.
Prognosis was all about statistics, and depends on whether or not I have surgery. People with stage 4 colon cancer usually live up to 5 years if they have surgery, but perhaps 3 without – give or take a year or two. So from that I figure somewhere between two and six years. It could be a lot worse. You can accomplish a lot of things in that length of time – ask my kids how much I can pack into a 2-3 day mini break!
It feels good that they are starting treatment so that the rate at which the cancer is spreading should be slowed down if not halted. Mikael is really happy about this. To be honest, I feel scared. I really hate the idea of having to go through the surgical procedure to insert the port. It’s a local anaesthetic so I would be much happier if they just did it up in a treatment room in the Oncology Dept, but nope, it’s a full blown circus of pre-op starvation, hospital gowns etc. I’ll be the first to ‘fess up that I am not the most gracious of patients when it comes to surgical procedures! I’m also concerned about how the side effects of chemo will affect me. I know what I could expect, but not what I will experience. I think that’s the underlying problem. The unknown always scares me.
So there we have it. After weeks of uncertainty and countless tests, my fight back begins in two days.
“I want one moment in time
When I’m more than I thought I could be
When all of my dreams are a heartbeat away
And the answers are all up to me
Give me one moment in time
When I’m racing with destiny
Then in that one moment of time
I will feel
I will feel eternity”
(One Moment in Time, Whitney Houston)
My dreams no longer count, and the answers are out of my hands, but this is my moment in time. A moment that will define me. Every challenge that has gone before will fade in significance as I meet this new challenge head on. Can I be more than I fear that I am? Do I have the courage to face my destiny without backing down? I don’t know. What I do know is that so far I have never backed down from a major challenge in my life. This cancer may break me, but I will fight it with all of the inner strength, serenity and grace that I can muster.