Sorry about the VERY late blog update, somehow this got lost in the shuffle, but I thought I would share it anyway! 
~Linda Wilson, Cancer Widow, and Friend
Our little cancer buddy just found out that 80% of his bone marrow is cancer…
And my printer would not work today. I balled my eyes out over the printer. I don’t think it was really about the printer? And I forgot my shaker cup at home so I can’t have my diabetic shake for lunch, so I know I will feel like crap later so I’m pre anticipating the crap. And I bit my tongue now it hurts every time I answer the phone.
And a co-worker asked what was wrong so I told her about our little cancer buddy and she proceeded to tell me about some relative she knows that died of bone cancer as a 35 year old. (not the same…at all) And how each death is meant as a lesson (A lesson from who? And I HATE these lessons and what the fuck am I going to learn from a little innocent boy’s death?!?!) And she blabbled on and on and finally I just got up and walked away. I need to protect my heart.
Cancer is ripping this little boy away from us and tearing a family apart and ruining my heart. What kind of “lesson” is that?!? And its certainly not his FUCKING TIME TO GO!!! Don’t tell me a child is “meant to go” no mother should bury her child. Ever. Period. Or a husband. Double periods and an exclamation point.
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I would like to send a little thank you to my friend Linda. I’m not going to hide her name anymore. She deserves her real name today. Thank you for listening and hearing me. (not the same things) Thank you for sharing and understanding. Thank you for being wise and sharing your knowledge of life and everything that goes with it. Thank you for having the courage to get out of bed each morning and face the day.
Thank you for being honest with me.
Thank you for the cold leftover toast…it’s an English thing…lol
XOX
Support Groups.
Those words make me think of alcoholics drinking crappy coffee in a moldy church basement, forced to be there by the court. This picture in my head was put there through various media influences, not based on real life at all. Is this picture true? Maybe…but not our Support Group!
When Griffin was going through treatment, I asked my social worker if there was a support group for parents like us. I was basically laughed at. “Nobody wants that” and “why would you want to hang around other depressed people?” were the responses I got. I felt like an idiot and very very very alone.
Luckily, Griffin happened to get sick at the same time as some wonderful other kids whose mums are absolutely fabulous! These warrior women have held a household together, kept their marriages alive AND kicked Cancer’s butt all while supporting me in my greatest time of need. I’m not at all surprised that this Cancer Mamas got together and started their OWN support group with zero help from the hospital.
And the PARENTS OF CHILDREN WITH CANCER-HAMILTON was born! These amazing parents meet up once a month at the local Ronald McDonald House which has lovingly opened their doors and supply warm baked cookies. We meet in the library of the RMH, a comfy cozy place with big relaxing chairs and soft couches to melt into. You cannot help but to breathe a sigh of relief when you step in there. These Mums and Dads come together, no matter if their children are still fighting, in remission or bereaved, they have found a safe place to speak, to tell their story, share their worries and make friends. We cry together but we also laugh together, a lot. We have battled the same disease together and watched our children grow up along side each other. I DEPEND on these people to get through my daily life! From sharing a funny story of how a feeding pump went awry in the middle of the night to a 3 am shout out for help over facebook. These people keep my head about the water and breathe the sweet sigh of relief into my soul. I know I am safe here. I can speak my truth, without sugar coating it to not hurt someone’s feelings or depress yet another person wanting an update. It is a safe place to fall and a protected place to grow. These parents are all knowing, they have wisdom beyond their years in all things, not just cancer! From parenting advice, to recipes that kids will actually eat to temper tantrum tactics to potty training know how. These are people that can help you with anything. I wish I could tell you about the wonderful stories shared, so inspiring and some are heartbreaking, but all are very important. They have forced me to DEAL with Griffin’s illness, treatment and recovery and also other feelings that pop up along the way like survivor’s guilt or serious anxiety over scans. (aka scanxiety) It is easy to push all these feeling down and not deal with them. But the boiling pot of feelings is going to boil over and attack when you least expect it! I’m so glad and blessed that I found a group that is so amazing!!! (PS, I can’t share any stories that have been shared in our group because A) they are not mine and B) We have an understanding of confidentiality that I would not want to break)
So what am I trying to get at? Support Groups are not just for Druggies and alcoholics. They can be a powerful healing tool for you when your child is fighting cancer. Is it for everybody? Heck no! But if you need someone to talk too, reach out. Ask your clinic if there is such a thing in your area. And even if there is not, there are great groups on the internet that are wonderful as well.
The major message? You are NOT alone.
Hug your babies tight tonight folks…
I felt lost. I felt abandoned, I felt alone.
When you start your treatments, your cancer team gives you a piece of paper with your timelines. Everyone is different but most people have a basic idea when and how long treatments are going to be, when your MRIs and CT scans are, when radiation is scheduled, etc. You are on a strict schedule of clinic visits and then in-patient time. Your day is filled with medication schedules, feeding pump schedules, outpatient therapy schedules. But once you hear that word, “remission,” you are suddenly dropped like a hot potato.
We went from clinic visits at least twice a week (sometimes three) plus once a month, a full week of treatment admitted to the hospital ward. You had access to all your doctors, to child life, to physio, OT, dietitians, plus nurses to answer all questions. Yesterday you were a cancer patient, a team of 6 doctors at your beck and call. And today? You are told to transition back under your family doctor’s care. WHAT? My family doctor had no clue about the meds my kid is on or the effects it has on him. How long do all these meds stay in his system? How long do we live like hermits, avoiding germs and germy people? When can my life go back to normal? What if he gets a cough? How long do we keep his port in? Why do I feel like I’ve been abandoned? There is no schedule for my life now! What do I do? I was the only one in charge of his care now. If he gets sick, it’s on me, I make the decisions. I did not like this at all.
I could not believe how high my stress and anxiety got at this point.
I was warrior mama up until then, beating cancer down with my bare hands. And then I just became a pile of mush. I think I finally let myself FEEL everything I had been bottling up over the past year. Now that my son was cancer free, there was time for me to deal, to feel, to cry. I was processing the fact that my baby could have died. I never really let myself think about that fact before. I had to suppress that fact just to get through the day. Now I have to deal with the fact that my boy with never be the same — he has scars that will be with him his entire life. And I have to deal with the fact that I will never be the same either. I have seen the dark side of cancer.
It was at this low point when I had to choose if I wanted to keep fighting or let cancer take over my life.
I chose not to be a victim anymore.
I was going to control my journey and take my life back. That is when I started these “Cancer Mama” blogs. At first it was just a place to vent, a place to barf all my feelings down in print. (That is why there is no editing) It helps me to share my experiences. I hope it helps others to read that they are not alone.
Nobody told me how hard ENDING cancer treatment would be. No one talks about the feelings AFTER remission. I expected that once October came around, I would get out of my PJs, put on my dress clothes and head back to work with a smile on my face and a spring in my step. I didn’t go back to work until the following April. I spent a lot of time at my therapist’s office (THANK YOU AMY!) who was able to hear my woes and turn them into healthy living and healing. It’s easy to stay in a funk —the cancer cloud can hang onto you, and over you, forever. But don’t let it win Mamas! Climb that mountain and don’t be a victim anymore – it’s not easy, but you aren’t alone.
But lately, she has been very hard on herself, I can see that she is struggling in her daily life. I can see that she is struggling to see the good. Time is not going to heal this woman’s wounds. Neither is a good cuppa tea (as my Nanny would say) This woman needs more than I can give her and I just don’t know what it is. Everyday I sit beside her and I see her shrinking, slowly slipping away, looking more and more sad and older. The stress of cancer has taken its toll on this beautiful woman. She wears her battle scars across her face. I see the pain, the heartache and the loss. I weep for her, I weep for all the mothers, wives, sisters, and aunts would have lost a loved one, its not fair. It will never be fair. This woman will never be the same, her heart will never be healed, but I hope one day she will find the strength deep down inside and start to pick up the pieces of her broken heart. Its a painful process. You spend all that time, building a wall up, to protect yourself from the pain, but its really just a numbing effect. You are not really healing if you don’t. You just build up a scab that is harder and more painful to rip off when you are ready to deal with it. Yes, it hurts, yes its not easy but in the long run, its better for you!!!
I wish I had a secret formula to fix people like this. The broken hearted. Cancer victims that were never sick but will never recover from thier dance with cancer. I wish I could wave my magic wand and *poof* she is happy again, she smiles without it looking painful. Her smile would reach her eyes and her soul. Now her smile is just a mask to get her through her day.
Days like this hurt my heart, like an actual painful throb that I can feel. I mourn for my friend that is hurting and there is nothing I can do. I mourn for our innocence that is lost. I mourn for her happiness that looks so very far away. I hate that she never learned anything from her husband’s cancer fight, like how strong she is, or what an amazing mother and wife she is. She only sees the negative. She didn’t bond with other cancer wives or families, she doesn’t participate in the amazing walks and fundraisers that bring like minded cancer fighters together…
All I can do is listen as she shares her stories, her worries and her troubles. I have nothing to help, this is a fight she has to do herself. But I can be here for her as she battles, its just up to her to WANT to do it!!!
Sigh…some days like this I wish I was a Wonder Woman, able to take everyone’s troubles and fix. Oh hum, I’m just a regular wife, mother and Cancer fighter that works a full time job and writes this very odd blog while sitting in the stall in her work washroom. Odd, i know, but it works! heheheehe
I’ve never been really huge into the whole holiday thing. I love getting together with family and friends and the feasts are always wonderful, but other than that, holidays could come a go and I really wouldn’t care.Easter/Ostara just passed, we didn’t do much of anything special, we got together with my parents a couple of times over the weekend for dinners. But Marty, Griffin and I had a relatively “lazy” weekend at home. We washed all the cars and trucks and cleaned them out (There is that lost mitten! Ooo, that french fry looks several months old!) Griffin was all into helping us, he even vaccuumed out the back seat! This time last year, he couldn’t climb into the car, his fingers were not strong enough to hold a pencil, nevermind the vaccuumm hose…so many big changes in his life! With a lot of hard work, so many things are going back to normal!
I’m beginning to relax a little, letting myself ENJOY these moments we do have. We are so very lucky that our dance with cancer was short n sweet. I intend to never dance that dance again!!!
So a very Happy Easter/Ostara/Spring to everyone!
Cheers!
Fast forward 2 years and look at us now? I’m still tired and exhausted but for different reasons (thank gawd) I made it through to the other side. The doom and gloom only lasts for a little while, then it passes by, leaving everything washed clean and fresh.
As horrid as your cancer journey seems at the moment, just know, this too will pass. Your journey will continue to march forward. Some of you may lose your child, some may have complications that they have to live with the the rest of thier lives, but we move on, we survive, we conquer.
I sit back in my car seat and smile. No gloomy day can keep me down. I no longer cry in the rain. I now smile and jump in the puddles.
Don’t let the dark cloud consume you ladies, look for the silver lining, if there isn’t one? The cloud will move on, taking with it the cold and the rain and the wind, rainbows will follow, from heaven or from earth, our children are our blessings!
When it comes to Cancer Kids, we must talk about the loss we all feel when we lose one. It hurts the whole community. I can only talk from an outsider’s point of view. Our son Griffin is still with us, but we have gone to a lot of funerals of his Cancer Buddies over the years. Yes, they are not my children, but it still hurts, almost like they ARE my kids. And I have a loss of innocence. I have survivors guilt. Why did my child live and theirs did not??? So I share with you my thoughts on child death:
Words of Advice From a Cancer Mama
When speaking to a recently grieved parent, please do not say things like, “It was his time”. We are talking about a child here. This was not his time. No parent should have to bury a child. A child that dies? Its not his time. Cancer stole his time…
Other things to avoid? Talk like, “God has a plan” or “God only gives you as much as you can handle”. When a parent loses a child, its a very trying time for them and they could be questioning their faith. Phrases like these do not help. I would HATE any God that did that too me, no matter the religion.
I know you are trying to relate, but please refrain from comparing a parent’s loss of a child to a dog or a Grandma. They are not the same. And it can hurt, a lot if you think that they are. This loss is a hole, their child has been ripped from them after a long hard journey. Be their safe place to fall, be a shoulder to cry on, be the supportive hand to hold. Do not be the jerk who thought that Fluffy’s passing was the same as a child. It can be insulting and hurtful.
Please DO ask if the parent would like to hear a story about your favourite moment with their child. (Some parents will not want to hear anything, others will love it, so its always best to ask) Tell a funny or touching story, how you will be remembering their child. Or tell them a story about what reminds you of their kid. Maybe every time you see a penny on the ground, or a cloud shaped like a dog, the colour lime green or whatever. It lets that parent know that you a are thinking of their child all the time and that they are still alive in your heart.
Do dedicate something for the family. A bench or tree in your favourite park, a song on the radio, anything to touch their hearts. I love to see people walking/raising money in honour of these little ones we have lost. The more money we can raise, the closer we will get to a cure. Let the family know what you are doing to honour their family.
Do listen to the parents. See what wording they are comfortable using when they are talking about their child. Some people do not like the word “loss”. To quote a Cancer Mama, “I did not ‘lose’ my child, I know exactly where he is! Right were cancer left him!” Some don’t like to refer to them as angels or their fight as a battle and they “lost” the fight. They tried their very hardest, saying they lost their fight makes them sound like losers! Some families refer to them in the present tense, others start talking in the past tense right away. So I would recommend listening closely to how the family is referring to the child and follow their lead. Every family is different, it can be very tricky but its worth it!
Sometimes there are no words…
Let that sink in for a minute. No words. You being there, present, is words enough. Sometimes silence is worth a thousand meaningless conversations.
Don’t be afraid to smile and even laugh. Yes, this is a horrid time. But its like a roller coaster, their world is crashing in around them, and then someone reminds you of a hilarious story about your cancer kid, you can’t help but to laugh right along.
Please don’t be silent, be vacant or disappear. They are still your friend or family. Don’t be afraid to reach out. Please call, take them for a walk, dip your feet in the sand together, connect, please cook food, please hold a hand or give a hug. Everyone needs a hug sometimes…
Please hug your babies tight tonight, even if they are just in your hearts.
XOX
Many thanks to the Cancer Mamas that helped me out on this one. I talked to some of you directly, and then some were just experience. But thank you for sharing your baby with me, even for just a little while. They will live forever in my heart…
A very special RIP to Kerry’s child (name withheld), Rowan, Austin, Matteo, Alivia and Kelsey.
Today I was asked why I wasn’t “over” cancer yet. I am not often speechless. But in this moment, I was absolutely at a loss for words. As I sat there with my mouth hanging open, a range of emotions flooded over me. Shock, horror, anger, self doubt, pity and then I settled on the good old “smile, nod and a walk away”.
This lady might have just been trying to make idle conversation? Or maybe she was actually wondering why I’m still obsessed with cancer? I don’t know. But what I do know? I WILL NEVER GET OVER IT! My son and my family and I, as well as thousands of children fought a war. A literal battle for his life! Call it PSTD, call it worry-wart mama, call it insanity, I don’t care. I will be talking about, advocating for and try to raise money for cancer forever. I will never ever stop. I will never get over it. I’ve lost my innocence. I know the facts, the numbers and the stats. I’ve watched babies wither up and die. I’ll seen the disease take thier hair, their mobility, their hearing, their limbs, their light…it is horrid. And I’m scarred from it. I will never, ever be the same. But instead of letting it consume me, instead of letting cancer win, I’m choosing to fight back. I’m choosing to stand up, to not accept one more child dying, not one more!
I’m sorry that as my friend, family, or co-worker, you cannot see, accept and/or understand that. I hope its because you have never had anything as scary and tragic as cancer in your life. You are lucky and nieve. Just like I was before Griffin got sick. I don’t blame you and I will not hold that against you. But if you are around me, you will be hearing about cancer. A lot. Quite possibly forever. lol So to answer your question, nope. I’m not “over” cancer. I never will be…
Hug your babies tight tonight…
Ahem, Attention, Attention please. I, Mama Emma will now share my secrets as to how to “deal” with Cancer…
Um, yeah, I have no idea.
hehehe, its probably the number one question I get asked. How I lived through my son getting sick, how my marriage didn’t fall apart, how I didn’t pull my hair out, how life went on. The truth is, you don’t have a choice! You HAVE to be strong! You cannot crumble into a million peices because your child is counting on you. I’m not going to lie, I certainly thought about never getting out of bed ever again. But you have to get up, no matter your circumstance.
A wise Auntie of mine told me an epic story, its been lost from my memory by now (I dont have a very good memory to begin with) But it was something about a kid that had to go to piano lessons, he was scared and unsure, the first couple of lessons, he would hide under the piano bench. The teacher would try to coax him out but there he sat, hiding. She just went on with the lesson with him under the bench. Eventually, the boy made it ON TOP of the bench and was able to learn his music. He realized he was good at it and only his only fear was holding him back. She told me this story and it really stuck with me. At the time I was quite depressed and everyday life was a struggle. So I started to judge my day like “this is an under the bench kinda day” or “Im on the bench, but holding on for dear life!” And best of all? I realized that even though the boy was hiding under the bench, he was learning, he was soaking in the lesson, getting to know the teacher and the music. An “under the bench” kinda day is not the end of the world, yeah, it sucks, but make the best of a crappy day and keep your ass on TOP of the bench! And also, that my own fear and worry was holding me back! I was missing out on some days that could be really amazing and for what? Worry? Guilt? Depression? No thanks…
Throughout Griffin’s journey with cancer, I had varying degrees of insomnia, but early on in his treatments were the worst! I would lie in bed and worry, I would go over the “what ifs” over and over in my head. I would also go over everything to do with his cancer care, all this meds (24 in all, all taken at different times, different doses, some with food, some with zero food, etc) to make sure I didn’t miss anything. Then I would go over the days and weeks to come, planning out food, what packing at to be done, organizing, all in my head. All i could think of was CANCER CANCER CANCER. When I did finally fall asleep, I would have horrid, life-like dreams and nightmares, most of which centred around cancer (I know, big surprise eh?) The worst one I would repeatedly have is, I would go in Griffin’s room while he was sleeping and take a melon baller (apparently that was hot) and carve out the tumour from his face. I could smell the flesh burning and feel the blood pouring over my hands. I would wake up suddenly and franticly, in a pool of sweat, and I would have to sneak into Griffin’s room to make sure I didn’t actually DO anything (We don’t even own a melon baller! LOL) Needless to say, after having a nightmare like that, it was VERY hard to go to sleep. Actually, I really didn’t WANT to go to sleep for fear that I would dream that again…
In truth, I wasn’t really dealing with “it” well, I was walking around like a stunned zombie. My doctor gave me sleeping pills as well as pills for stress and anxiety. But they just took the edge off, and I didn’t feel emotional at all, like either way, happy or sad. I just, was there. Then one day I realized, that I wasn’t enjoying my favourite song, normally I would have cranked up the radio, opened the sunroof and bopped along to my song. But there I was driving along, not caring. This was not me. I didn’t feel suicidal or anything, I just didn’t FEEL anything. I knew this wasn’t me and I knew I had to find someone to talk too. I reached out to the free therapy available through my work. I met with a man that wanted to deconstruct my childhood, he wanted to “get in my head” and see the true “meaning” of my issues. I was totally creeped out and RAN from his office! I was really really scared to go and see someone else. I waited a couple of weeks and then called again. This time I talked to “A” over the phone. The whole conversation was basically about her, she was a mother and wife, ran a laid back office and she gave me her website to see if I wanted to look her up and see if I felt comfortable talking to her! Well! This was EXACT opposite to the last dude I talked too. I walked into “A”s tiny little office, and sat on a fake leather couch, ikea-style. She was warm and smiling, blonde and tiny short. I instantly liked her. She started out the session just asking me why I was there. Well, that started the flood gates. I BLLLLLLLAAAAAHHHHHed my whole story out in out like a barf for an hour of a conversation. I couldn’t talk fast enough, going over the horror of the past couple of months. It felt SO good telling someone the whole truth, without sugar coating, or holding back to protect their feelings. It felt freeing. By the time I was done, SHE was in tears. Again, I was unfeeling, just telling my story. The first few visits was just me telling my story, going over facts and stuff, making sure I got it right. After awhile, I started to enjoy going to see her! I liked the feeling of bouncing things off of her, seeing her opinion of how to deal with a rude doctor, or an insurance company agent I wanted to strangle or whatever. She asked me one day what the beads were that I held in my hand. I never noticed that I did this, but apparently, i would fiddle with Griffin’s bravery beads (he gets a bead everything he gets a poke, needle, xray, mri, chemo, radaiation, etc) I was using them like prayer beads maybe? They kept me grounded and present in the conversation. Now, this therapist and I are no longer “seeing” each other but we do keep in touch through email and I update her on major events and stuff. She was an amazing part of my recovery. And I am ever so thankful for her!!!
So in closing…my advice to deal with it? I dunno, I just fumbled my way through it, which is probably what you have to do as well. I wish you good luck and remember to trust your gut and hug your babies tight tonight!
XOX
