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K_J_'s avatar
K_J_
Member
10 years ago

Step 5

Hello ladies, hope you are all feeling well today (hugs to those who aren't!).

Well, I did it. I had my first FEC100 infusion this morning. Let's do the list of positives first:

- My hair looked great today.

- I get free sandwiches.

- I am extra lucky that I get to have my treatment in a small unit. Only 6 chairs and 4 staff. This ensures that the sense of anarchy is negligible. I have no capacity for chaos at this point.

- The nurses at my facility are beautiful. So gentle, so kind, so understanding. My nurse today has held her position for 10 years. I am lucky she is on my team.

- I get free sandwiches.

- It was kinda drama free. Except for me crying like a baby. 

- I had a sandwich that was free!

Now for the negatives:

- I had to have effing chemotherapy today. Seriously? How the hell did that happen??

- There was zero fanfare. I feel that such a monumental occurrence should have been accompanied by a Miss Universe style finale. There were NO flowers at the end. Certainly no tiara.

- I cried. A lot. I'm pretty good at putting on my war face. Tears are reserved for private space & time. Yesterday was a super bad day, I woke to the crushing reality that treatment was 24hrs away and then the devastating news that my husbands 'mother' had passed away over night quite unexpectedly. The tears flowed very freely yesterday and once I start, it can sometimes be difficult to stop. I have cried more in the past 36 hours than I have in the past two months. 

- I feel like crap. (Apologies, I'm trying really hard to use my lady-words). Snaps to all you warrior princesses that felt pretty much ok or just said you were because you are brave and strong, but I feel like I have something contagious and I'm not selfless enough to put on my big girl panties and pretend that I am not experiencing  low level of physical misery.

- My husband needs to go interstate next week. He is devastated by loss. And his grief is being sidelined by his sense of responsibility to me and that seems so unfair. My heart breaks for him. As far as I am concerned, his attendance at the funeral of the woman who opened her home and heart to a sad and broken little boy, is non negotiable. He needs to be there for himself, and also his best friend whose biological mother it was. 

- My husband needs to go interstate next week. I'm terrified of him leaving me alone. I won't be alone, of course. My support network is extensive and wonderful but he is the only person I feel safe being vulnerable with. I will never forgive myself if he doesn't go and I'm afraid if he stays to care for me (in spite of my insistence that he goes) that he will forever be just a tiny bit resentful. 

- My hair looked great today. Just when I thought I didn't care about losing it, I realised that I do. A lot. 

- I couldn't think of anything worse than eating a sandwich.

No doubt this is the part where things get interesting. And all of that is 'fine', but I have a sneaking suspicion that life may get in the way of my carefully constructed Fort of Resilience.

Wishing each and every one of you love, light and endurance ????????

 

 

 

10 Replies

  • Hi KJ,
    Just came cross your post.
    Firstly, I'm glad to hear someone else has shed their fair share of tears. I'm so sorry for your husband's loss. I hope you're coping ok while he's away.
    I had my first round of AC chemo Tuesday last week. I decided to try the DigniCap. It was bloody tough going, so I better see some results, or I will give it the boot. Other than that, my first round of chemo hasn't affected me as badly as I thought it would. I wonder if it will be different the next doses?
    My tears last night were twofold; missing my pre-cancer life and missing my beautiful 10yo daughter, who is off holidaying with school friends and families. I hate being sad. It is so not usually in my nature, so I struggle with it.

    I SO get what you mean about your husband being the one you can be vulnerable with. That's how I feel about my partner. There is no next best person either. Not even my beautiful Mum, Dad or Sister. Speaks volumes for our relationship I guess.

    Wishing you lots of love and may your 'Fort of Resilience' continue to stay strong, whatever else is thrown at it. XOXOXO

  • Poor you, I hope you feel better soon. Mirrors are the scarest thing.

    Kim

  • Hi KJ,

    You describe what everyone feels - but everyone tries to stay 'positive and strong' as you say.  Nothing wrong with some raw honesty once in a while.

    I have finished chemo and it wasnt the nicest thing to go through in life. I am an ex-hairdresser and spent a lot of time in the mornings doing my hair before leaving home. I have coped with losing my long hair okay afterall when I didnt think I would. I found a great wig, and shaved it all off when it constantly looked like I had been carrying around my longhair domestic cat, Charlie due to the malting plus the mullet style that was left.

    Since then I love the fact that it takes me 30 seconds to get my hair on in the mornings and the feel of the shower on my scalp is quite nice. We even went to Port Douglas and I managed with a scarf and a hat, or a special, cool looking swimming cap I purchased from Canada for when we were out on the reef.

    I hated the food in the cancer clinic.  It always made me feel nauseaus for some reason. Im sure it was more about where I was and the experience.

    I am now up to Radiotherapy, I normalise the situation as best I can. I pretend I'm going in for a beauty treatment each day LOL.

    I also found a meditation CD that describes the chemo experience as my healing chair and the healing liquid. It helped pass the time, I was too anxious to read, and helped with any pain (needles, ice gloves etc).

    Anyway, all the best with your treatment, we are all thinking of you as are all your friends, family and loved ones cheering you on.

    cheers,

    Kym

     

  • It's natural to grieve, no you aren't being a sook. You need to release just do it. Condolences to you and your husband.

    Think of yourself in a transition, another step forward to your new self. You will get there, have no doubt.

    Although awful for your husband, it might just be the release he needs to go to the funeral, meet family etc. Men hate it when they can't do anything much for you. Men are doers.

    Would be great if when he gets back you are recovering nicely from the dose and feeling a bit better. Something for you to look forward too, having him back. :)

  • Hi kj

    i had my 3 rd round of FEC yesterday. My neutrophils dropped so low the last time I have to have the fligastim injection today. Which I'm told can make you feel like being run over by a truck. Can't wait for that. You sound like you've got it tough right now and you have to allow yourself to feel sad and vulnerable. Let others comfort you. It a good start to ventilate on this web site so well done. On a more practical note my tip to you is keep up with regular mouth care even if you don't hve symptom. FEC gave me the worst mouth ulcer I've ever had in my life.  Be kind to yourself and don't hide or put of those tears. They are healing 

  • Well written

    I Can relate !!

    Stuff the big girl panties sometimes, it's brave to be vulnerable anyway

    I didn't think I was particularly vain but home today after bilateral mastectomy and realize BC has taken my hair, my skin is yuck, I've put on weight, my nails are revolting, I have red watery eyes and now no boobs :(

    How did this happen ?

    I hope your husband is back quick to hold you in a safe space xx

     

     

  • Oh KJ, how I wish I could just wrap my arms around you and give you a safe place to cry. Thank God you have that safe place in your husband.  I am so sorry for this added grief on top of your life being turned upside down. Sometimes it feels like it's all too much to cope with....like every other lady who reads your post I'm crying with you, love Tracey??

  • Hi KJ

    Am so glad to see your post - was wondering how you were. Really sorry it's so difficult. I'm amazed at what crap has been thrown at you and how you articulate your vulnerability so frankly, and so bloody well written. Are you a writer? 

    What gets people through this? What works for you?

    I hope you have people around to step in as necessary. You can't be superwoman. I don't know what to say other than you are beautiful, fabulous and I really admire you. Please keep posting.

    Ruth x

     

  • Hi K.J.

    sometimes swearing is the only way to express yourself at this time. Love your honesty and to be honest you will feel crap before you get better. I would cope better if I had kept my hair.

     Good luck with your treatment.

    kim

  • Love your honesty...no words for your loss except to say you are amazing and strong and you hive me inspiration.