Tonight I sit here swallowed in silence but surrounded by music …. Bells dinging, pumps humming, alarms ringing, babies crying, chatter at different tones and pitches. I sit here in the isolated songs filled with such diverse emotions. Continue reading “Not yet written”
Hate is such a strong word … One I don’t like to use … But seriously … I absolutely hate that my normal is supporting my son while he vomits, I hate that he is so critically thin, that the treatments I sign him up for damage parts of his delicate body, I hate that I am so helpless and I hate that I am angry.
I am so exhausted.
I hate feeling this aching in my chest.
Fuck cancer !
I love being honest.
The first month of chemo is almost over, we are about to begin the next cycle and quite honestly I am feeling pretty apprehensive about it.
Those who really know me know that I’m not one to wait in anticipation for test results, or get worked up about something that I can’t control, but this has just got to my core and even the slightest thought of going back and watching him get injected with this poison and then spend the month sick just eats me up.
The great thing is He’s okay with it, he understands that it’s the option that gives him the best possible chance of wiping out the cancer, and as he said “it’s not as bad as he thought it would be.” This kid is seriously amazing.
His eyes are red, his mouth filled with sores, his skin has peeled, his feet and toes have ached, he vomits daily, he is pretty exhausted, his tummy muscles are sore, his weight is low, he has eaten a single maltese, a small bite of chicken, a few sips of frozen coke, a few spoons of yogurt, a little ginger biscuit …. I think that’s it …. Thank goodness he decided to get the PEG (feeding tube), a very wise choice. He too made the decision to get a biopsy prior to treatment, with this chemo his fertility is wiped out, even though as stated by him “I don’t know if I want children, I don’t even really like them….. But I’m doing this for my future self”.
What became clear this month was my limits, and my courage. By the forth day in hospital my tolerance is zero, and I really don’t give a F**k about much, how extremely sensitive I am when we get home from the hospital and I need time to gradually integrate back into the ‘neighborhood’, my time is very limited and it’s valuable and so I must make choices of spending it with those who value me and appreciate the depth of what is going on in our lives now.
I found the courage to speak up, loud and clear, not to be intimidated by my lack of medical knowledge, I opened up to ask and to learn, to share my vulnerability and rawness of my emotions, I found the strength to reached out to friends even though I knew I may be disappointed. I found the courage to be honest about the nastiness in this disease and to embrace the moment and accept just whatever it may be.
Dylan taught me that not everyone is easy to talk to and that’s okay, and he reminded me that things could always be worse, physical wounds do heal with care and time and you can still be happy when you are sick (well not while you are getting sick but once the vomit is over get on with whatever you were doing no need to dwell on it).
The biggest blessing in all of this is friendships, new friendships, old friendships, the value of communicating and sharing time with another person.
Listening to Dylan chat and laugh while he talks to his friends online, his face brightens up and he is his usual self. He loves his friends, they take time to game with him and talk with him, some almost every day, and just last night I overheard him say “I’ve got the best brother, he lets me play on his stuff and …..” My heart swelled, I know it’s true, Josh has been such an amazing support and friend not only to Dylan, but a tower of strength and optimism in our family, accepting and undemanding, he just gets on with what needs to be done. I am so grateful to know these two little (not really little) men, (I’m a great Mum so I can totally understand how these two amazing souls share my world).
I too have found the gift of friendship to be in the quality not the quantity, I’ve spilled my heart to some, uncensored and open, they have listened and made me feel valued and supported, I truly don’t think I would survive this without them. My mother has been listening and loving every day since the start, truly so blessed for our beautiful relationship and her strength to be an incredibly strong support for me.
Within the safety of the hospital strangers bond, support and share with ease, honestly I cannot stress enough the value of feeling heard and of listening to someone.
This ride can get pretty isolating and loneliness has been a frequent visitor for both Dylan and myself. Thank you to those friends and family who have offered us comfort.
The most thoughtful of gifts were received, twice a bag of very South African goodies arrived at a most needed time (one in the hospital from my family in South Africa – thank you Mom, Dad and Sandra) and the other dropped by our front door on a very low day just out of the hospital (thank you gorgeous Simone). Beautiful roses from beautiful friends (Janelle and Lara) , an awesome Halloween card from a lovely young lady in Idaho (Brandi), coffee and cake and quality time with very special friends (Thank you for listening and for taking the time to share your care Janelle, Sam, Colleen, Maryanne (Dylan loves the book Maryanne)) , an incredible ‘The Walking Dead’ artwork created especially for Dylan (thank you talented Zoe for your thoughtfulness and generosity).
I wish I could say I was replenished and fully charged, ready for this next round but I’m exhausted, I’m disappointed, I absolutely hate seeing the suffering this treatment creates, the feelings of frustration of the ignorance or dismissiveness by those who do not know, but we must go on, and that we will and Dylan will teach me more and remind me of the things I have cemented at my core. We will be touched by the love and kindness that surrounds us, and learn many new things, we will shed any heaviness and our hearts will expand.
The value found in this journey out weighs it’s price.