A Year After Diagnosis

It’s been one whole year since I heard those dreadful words ‘you have cancer’. When you’re going through a difficult time in life, a year can seem like an eternity.

Having gone through 15 months of hospital visits, countless tests, treatments and worries with my son, we were nothing but relieved when his doctor told us that he was doing well and we could extend the time between hospital visits. But life had something else up its sleeve, and only two short days of being happy after the news of Henry’s progress, my life was turned upside down in the one tiny moment I felt that lump. Just like that, the rug was pulled out right from under me. We have spent this past year dealing with my cancer and our 2 year old son getting ill and going through five surgeries.

The beginning was probably the toughest; the denial, the anger, the tears, the sleepless nights. I often imagined myself as the clock from Dali’s ‘The Persistance of Time’, while we waited to find out exactly what the diagnosis was. Even writing this now I’m thinking it’s too soon and I feel a flood of emotions.

My cancer part one: dealing with the news, and being rushed through a series of tests. I was officially diagnosed with grade 3 Ductal Carcinoma on the 29th of May 2014. ‘you have an aggressive cancer, so you’ll need the most aggressive treatment’. After that, everything and everyone sounded like they just came off the set of Charlie Brown, and I walked around in a daze and wept puddles of tears.

My cancer part two: surgery, aftercare and recovery. This meant I wasn’t able to carry or hold my son for at least 4 weeks. The moments I wanted nothing more than to do just that, I couldn’t.

My cancer part three: chemotherapy. The first treatment destroyed me I dreaded each session after. I headed out to every treatment in tears because I felt sick with the knowledge of what was in store for me for the next few weeks after treatment.

My cancer part four: day surgery for portacath insertion.  My first chemo treatment was administered through a vein in my arm, but my veins are so thin, the best solution was to get a portacath for all future treatments. (A portacath is a plastic disk inserted beneath the skin in the upper chest with a catheter directly into the jugular vein.)  Funny note: I was given an ‘instruction manual’ for the portacath that you could easily mistake for the instructions of a home appliance. I actually laughed because I thought the doctor was kidding. He wasn’t kidding. I’m still laughing.

My cancer part five: my hair falling out. The trauma of it falling out into my hands and all around me, was more traumatic than shaving it all off. Eyebrows and eyelashes followed suit, and even harder to accept.

Just when things were more than enough to handle, my son’s scheduled routine surgery went horribly wrong.  I wept over his bedside and quickly forgot about anything I was going through or feeling. My only pain was for him and for what he was going through. He got better and I carried on with my treatment but only 6 weeks later, we were back in the hospital with him. Antibiotics weren’t working, he had fever and it took a few days until doctors knew what was wrong. And there I was in the most dangerous of situations, with my low white blood cells, a sick child and feeling an impending breakdown. Sure I could have left his side, but it hurt too much.

There were so many times I wanted to give up, and it was a choice, sure, but as I looked at my son, I knew it was never an option.

And now what continues to gnaw at my being is feeling like I failed my son. Regardless of whether I am a match or not , I don’t even have a the choice to donate a kidney to him, not for at least another 7 years. FYOU cancer for deciding that for me.

My cancer part six: marked with tattoos for radiotherapy.

My cancer part seven: I expected to feel so different after my last chemo treatment, but I didn’t. Sure, I was happy, but I felt a void and I was sure that there was something seriously wrong with me for feeling this way.

My cancer part eight: radiotherapy, everyday for 4 weeks.

My cancer part nine: post treatment scans and a collection of hospital bracelets.

Most people think that once you get the ‘all clear’ everything goes back to normal, even I fantasised about things getting back to ‘normal’. But normal is now different to what it was a year ago. I finally understand people who proudly announce their number of years as a cancer survivor. Every day is a reward and a battle won, and once you’ve had cancer nothing is the same.

What happens now that the “cut, poison and burn” are over? My year of cancer defined me; the tests, the doctors appointments, the hesitations and the worry, everything comes up cancer. Sure, I left cancer behind and on paper, I am rid of it, but it took more from me that I ever expected it would.

My husband and our families had so much to bear with both me and our son. I would be lying if I said it was easy for anyone. My husband and I had our moments and there was so much strain in our marriage that there were days when I thought we’d never recover from the damage of what we were going through.  I was angry often, and as much as I knew I needed help, I just wanted to be alone. It was hard for everyone and I will never forget the love and support we got from family, friends, medical staff and even people I had never met, it helped get me through so much more than they can ever imagine.

I should be back to normal, right? Physically, I feel ok but emotionally I’m so very tired from the thoughts and the sleepless nights and the worrying about my son and my marriage and trying to stay alive. I am constantly trying to pick up the pieces of the life issues that have come out as a result of the cancer. Six months later, I am still dealing with the effects the chemotherapy has had on my body (hair, teeth, nails).  I now struggle emotionally and physically with infertility, premature menopause, and fatigue, to name a few. Overall, I feel healthy I still second guess my well-being and wonder if I really am ok. A year ago, I had cancer, I didn’t know- and that’s scary as hell.

Depression creeps up on me on a daily basis so I try to focus on making the most of each day. But then there is this pressure, ‘am I doing enough to make the most of my life?’, ‘am I making the most of the time I have with my son and my husband?’ Not feeling fulfilled or accomplished at the end of the day, sends me spiraling into sadness.  With the medication keeping depression and unstable emotions at arm’s length.

I found myself asking the same question everyday ‘I’m cancer free, why do I feel this way’ and had it not been for the article by Suleika Jaouad I came across, I think I would have struggled much longer.

I’m not alone in feeling this way. A growing body of evidence suggests that cancer survivors continue to struggle with medical, financial, professional and psychosocial issues long after the end of their cancer treatment. For many, the experience provides a renewed sense of life and purpose, but the task of rebuilding your life after something as devastating as cancer can also be a deeply disorienting and destabilizing one.

I don’t want to sound ungrateful, it’s not my intention. I know I was lucky and I am grateful everyday. I found the cancer in its early stage and thinking about that makes my newly grown hair stand on end. I am grateful for life. Things could have easily been much worse for us.

When I was diagnosed, I was approached and contacted several times about counselling and support, but the truth of the matter is that the months after my ‘all clear’ have been just as physically draining and emotionally trying.  The system offers a support net while you’re going through it, but how about after? The most aggressive part of my treatment is over but I’m still going through treatment, still on medication, and will always need tests – this is my life for long-term survival.

When I look back now, I don’t even believe that we went through all of that. I feel ok these days, and am grateful that I am no longer spending most of my days waiting for doctors appointments, radiotherapy or other boob revealing session but I still have a long way to go on my own path and with my husband and son.

 

31 Comments
  1. This article basically sums up how I’m feeling right now…asking the same questions, experiencing the same fears etc etc despite receiving a very good news (an all clear )

    1. Hi Carmel, its a horrible feeling becuase you know you should be happy. This is why I wanted to share my experience and feelings. I can assure you its normal, but you musn’t let it consume you, as difficult as it might be. Reach out to loved ones to continue supporting you, at least until you find your bearings a bit better. Take care

  2. Hi Lorinda,
    I found your post through the Mom Bloggers Club and I will have to say its the best blog post I’ve read in a very long time. Although I can’t imagine what it’d be like to go through everything you have, your beautiful (and sad) post gave me a brief glimmer of your feelings and your struggles. Thank you so much for sharing your experiences and giving the rest of us perspective on our own lives and health. I hope you and your son continue your recovery (physically and emotionally) and I overall just want you to have a vibrant and lovely life from here on out!
    Cheers,
    Amy Lanci

    1. Thank you for your well wishes. It means a lot to me to know that you enoyed my post and got some perspective on your own life. Its important to cherish all the little things.

  3. I literally just stopped what I was doing and said a prayer for you and your son. I can’t imagine the ordeal you have been through. Not being able to hold your son for several weeks after surgery? That would kill me! I prayed for continued healing and peace for you and your baby boy! I hope that you can use your story for good and to encourage others who are struggling with this awful disease.

    1. Thank you so much Logan. Thank you for your thoughts and prayers. I hope that others will find strength and courage from my story – it really is a difficult thing to deal with.

  4. Thank you for sharing your story. I can relate to the feeling of not bouncing back to your lively self after going through a physical/emotional/mental battle. This may be a weird idea but, just the other day, I wrote a list of all the things I live for + things I would like to experience one more time + things I have yet to experience that’s on my bucketlist. It restored some energy back into my soul, for now. It’s difficult to get out of that bad mental state sometimes so a little bit of inspiration can be soothing. Be well!

  5. I wont even pretend to understand what you have been through and continue to go through. I cant understand the physical or emotional pain, I can only hope it will eventually stop. I can’t understand the agony of you having such a sick little guy but I can pray that he thrives. I can’t understand your lows but I will pray that the highs will now outnumber them. I will be holding you in my heart, my prayers, and will continue to send you positive and healing energy.

  6. You are an overcomer. I can’t even imagine what it’s been like. I have my own struggles, but not everyday like yours was. I am sure your story will really help someone in a similar situation and I hope and pray it gets easier for you each day.

  7. I can’t imagine all the things you’ve gone through in such a short time. I admire your bravery and strength to pull through not only your son’s health issues, but your own too.

  8. My gosh, that was a hard post to read. My takeaway, you are one very strong woman, I applaud you. I wish you and your family continued strength to get through such an unfair level of hardship that has befallen you.

  9. So many people assume that just because you make it through something, you are ok and back to normal. Going through, in your case, cancer can take alot of of somebody physically and emotionally and its refreshing (for a lack of better words) to read this.

  10. Thank you for writing a piece from the heart. I think more people should write such honest posts. You are an amazing woman, I applaud you, and am sending only good thoughts and warm wishes your way.

  11. I am so sorry, and I am so happy that you have your little guy to help you through. Hes a cutie and puts a smile on every ones face, and I am pretty sure you adore him. warm wishes and prayers, from one blogger to another. 🙂

  12. I love how honest you were here. I cannot imagine all that. I feel like you even writing about it, is a positive step to feeling better. I read stories like this and my heart just breaks. I don’t even know you… and I just think how unfair it is. I will be sending happy and healthy thoughts to you and your son! XO.

  13. I’m so sorry for all you went through! I feel silly with my own worries now. I’ll seend happy thoughts for you and your son. You deserve happiness – you survived one of the hardest things in life and that makes you a warrior.

  14. Wow! You are a survivor. I cannot even imagine traveling the road you have been down. While I have death with loss, I have never had to fight for my life. Then throw in your son’s health – that is too much. My husband has told me that the time he dealt with his cancer was the loneliest time of his life. Even though he was surrounded by loved ones. I wish you well on you road to finding wholeness. I am saying prayers for you and your family.

  15. You have been through so much, and I know your journey has been a tough one. I’ve spent about 7 years of my life caring for loved ones with cancer (one of them my mom). My Mom survived, but my other relative not so lucky. Your entire family dynamic and outlook on life changes when cancer enters it. However, your words and snapshots tell a beautiful, honest account, and your son is absolutely adorable.

  16. This was definitely a tough post to read. For me to say that it was tough to just read, I cannot begin to fathom the kind of trauma and pain you went through. You are such a strong woman, and your son will be just as strong as his wonderful mother is. Keeping you in my prayers, and more than that reminding myself to be more like you. I have gone through a lot of trauma in my life (a majority of it as a kid), and always keep to the notion that I am strong. You are truly a very strong woman, I aspire to have your outlook and strength!

  17. I can’t even imagine how it feels to have gone through all that you have and what you are still going through 🙁 You seriously are an incredibly strong individual having gone through so many obstacles and my heart is with you my Dear <3

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