Sorry about the VERY late blog update, somehow this got lost in the shuffle, but I thought I would share it anyway! 
Mar 19, 2014
This is a hard note to write. When you hear the words that your child has cancer, your life changes immediately, forever and it seems it will never go back to normal. Griffin is 22 months old, still strong and young enough that hopefully he will survive his battle with Rhabdomyosarcoma, but as a parent, it feels like the life has been sucked out of you, “normal” is no longer part of your daily routine and I struggle to see how I am going to survive this disease and I’m not even the sick one! But thankfully there are people out there like you folks, who bring a little bit of sunshine to a rainy day. Now I understand the “rainbow” part of your name!
Thank you ever so much for your generous gift. It has taken off a bit of financial stress, one less thing I have to worry about, and more time I can dedicate to our beautiful boy. And the icing on the cake? Talking to a wonderful couple who have stayed strong and are a great example to us parents that are just holding it together.
You are doing such a great service to our community and honouring your daughter is such a generous and beautiful way.
Thank you for the advice, the gift cards and most importantly the hope…
Love Emily, Marty & Griffin Hammond-aka Cancer Fighters!
Dear Cancer Mama,
It’s 4am. I’m up changing a feed bag, checking temp and of couse, worrying about my sweet little boy. Like your son, he is fighting Rhabdomyosarcoma but his is on his upper arm. Like you, he is 2 years old. Like you, I’m just barely hanging on. Like you, I’m surfing the internet at 4am. Like you, hey! I AM LIKE YOU!
As I’m sitting here, reading your words, it feels like you are right here with me, sitting on the couch chatting. I’m laughing as your mother rips out Griffin’s Feeding Tubey playing tigers. I’m crying with you as Austin passes away. I’m praying with you to find a cure.
Thank you for sharing your experiences on your blog. Thank you for being brave enough to share not only your experiences, but your thoughts, opinions and feelings. It gives me hope. It gives me hope that like you, we can survive this. Like you, we can come out the other side better people. Like you, I want to help others. You have inspired me to look up my local Cancer Society and volunteer. I’ve decided that no matter how our “cancer journey” (as you call it) turns out, I will make the best of it, look for the silver lining, and not let cancer win.
Thank you for giving me hope,
~Pam, fellow Cancer Mama from Maine
Don’t ask me how I came across your blog, totally by accident yet totally wonderful! I am absolutely amazed at your ability to explain a cancer experience with total grace and humour at the same time. It is just smashing to find a similar situation to ours, even all the way across the pond!
Our daughter Emily (!) has Rhabdo which has grown in her lower jaw, she is six and a mighty trooper as we are nearing the end of her battle and will soon cross into the land of remission! Thanks to your blog I kind of have an idea of what to expect and not be surprised if my feelings/mood changes, etc. Why doesn’t the hospital tell us such things?!?!
We are wishing you and your family all the very best.
Cheers!
Amanda
Dear Emily, I am also a “Cancer Mama” as you call them. What a shitty club to be part of. And I’m a hoarder of information. I spend my sleepless nights trolling the internet for bits of information I can write in my book. It can be anything from inspiration quotes to cancer facts to germ fighting recipes. And then one night, I followed your pin to your blog. It was a life changing moment reading your posts, shifting through your story, following your adventures. I laughed with you, I cried with you, then I laughed again. But most importantly I took the good bits. I started scribbling them down, then I moved on to cutting and pasting, stealing good tidbits of info. I ended up sharing your blog with everyone I know, including all the “Cancer Mamas” here and now have bookmarked your blog. I check it everyday, hoping for a new post, wondering what you will come up with next. And as usual, I’m surprised every time. Congrats on building an amazing go-to place for Cancer families. Thank you for opening your heart and sharing your soul. You are doing an amazing job. I wanted to share with you what connected with me the most. Here are the quotes I “stole”:
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.
Then cancer hits us and rocks my little boat. I’m suddenly clutching the sides and trying not to be thrown overboard.
Welcome to the wonderful world of Children’s Hospitals filled with sick children. Please wash your hands.
And the sad part? I didn’t spend my money on booze or drugs or tattoos or vacations or fast cars. I spent my money on Cancer. Fucking cancer. What a complete waste of money. A waste of my money and my time and my health and my sanity. Fuck Cancer…
Dear Cancer, Because of you, our family grew stronger as you grew weaker. Because of you we have gained the friendship and kinship of other cancer families that I consider as close as family. Because of you, I don’t take anything for granted. Because of you, I wake up each morning thankful for the day I had yesterday with my child and looking forward to the day I will have today. Because of you I will never be the girl, daughter, wife, mother that i was before. There is no “going back to normal”, there is a new normal now. Its stronger, bigger and badder than Cancer.
I’ve put my whole life on hold to dance with Cancer.
Yes, I said a “family with Cancer”, because really, when one member has Cancer, it affects the family unit as a whole. One member suffers, all the members suffer. We work as a group, as a team, with one goal. KICKING CANCER’S BUTT!
Hold their hand through the most terrible, stressful, awful time of their lives. Their baby is sick, their marriage is rocky, their finances are in the ditch.
Another issue would be the tube itself, being there. Your child will get stared at, babies will try to yank at it, children will ask about it. Some cancer parents would get upset. But just like any other medical disability, instead of getting insulted, or awkward, turn the situation into a learning experience.
And they were wrestling on the camp cot, you know, like tigers do, and “somehow” Griffin’s feeding tube got pulled out. Off to the camp medical office we go. We decide that we are not going to put it back in, Griffin will have to struggle through the last couple of days of camp without it. Fast forward a couple of hours, we are back in the medical office, now his leg needle has “somehow” came out as well. With our heads hung low, we have to explain that a “tiger did it”. Griffin thought this was WAY too funny and giggled himself silly as we had to explain the story to the camp medical staff, the camp director, and also the nurses and doctors as we had to attend the hospital to get everything put back in!!! hahaha LOVE IT! Tiger wrestles is the best kind of wrestling! teehee!
Of course, it could be me! I like to think that I have not changed, but that would be a lie. I HAVE changed! (I hope for the better!) I’ve lost my innocence for sure. I’ve faced my child’s mortality and of course pondered my own. I’ve buried chemo buddies, I’ve watched children waste away to nothing. I’ve watched cancer rip families apart, tear apart marriages and drain every cent a family has. I’ve watched child take medicine that poisons thier bodies to the point of death, meds that take thier hair, sight, hearing, mobility, and watched thier parents give it to them. I’ve put on a lead bib as my baby gets radiated, over and over and over again. I’m not the same person. I’ve seen the dark side of life. But because I’ve seen the dark side, I hang on tight the bright!
I’m here, my heart hurting for my fellow Cancer Mama. I’m here to represent all us Mamas out there. I’m here to respect and say good bye to the littlest cancer warrior I’ve ever met. I’m here, I’m present and I always will be.
I hope we can blaze a trail of friendship and understanding for new cancer families coming in behind us! Do not be afraid to love your fellow cancer kids and supporters! You will be thankful that you did! Thank you fellow Cancer Parents for opening your hearts to me, to us. Thank you for putting your heart on the line and your heart on your sleeve. I understand the risk you take opening your soul to others. I understand and I’m thankful.
Once your life is ripped for you and you work HARD to but the pieces back together, you savour every moment you’ve got left.
Put altogether we get these amazing “words of wisdom” which I recently read at a cancer support group. Again, everyone laughed, everyone cried, and everyone laughed again.
Thank you from the deepest depths of my soul. Thank you for letting me out, for giving me permission to enjoy the blessings as well as the ugliness of cancer. Thank you for opening my eyes and letting me see the light as you see it. I look forward to your next post! (no pressure or anything! Hahaha)
Your fellow Cancer Mama from BC
~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.
***********************************************************************
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!
