What the FEC?!

On the day of my first chemotherapy treatment I awoke early with a feeling of dread, fear and huge anxiety. I’d laid awake for ages with a million thoughts whizzing around my head replaying over and over again. Finally Pats woke up too and I couldn’t hide my fearfulness – he comforted me as I lay in his arms sobbing away at the thought of what was in store for me.

Having spent a lot of time at home over the last few months, I hadn’t been out shopping very much and have taken to ordering things online and having them delivered to home. Consequently, I’ve now become quite friendly and am on first name terms with my local courier – the lovely Jan. I hadn’t mentioned anything to her at all about my illness – she must have just thought I had a penchant for online shopping! Well that day she’d stopped by to deliver a parcel “Have you been away on holiday? I’m always happy to go away for a week, but any more than that and I want to come home”, she said. “Yes, we’ve been away. I really didn’t want to come home though – I’m starting my first chemotherapy treatment today”, I said and then immediately burst into tears. I felt so sorry for her, going about her daily business and there was me in a complete soggy mess on the doorstep!

Pats had been nipped out to get some bits from the shops and when he came home, he presented me with a gorgeous bunch of flowers and a nice new vase to put them in. Thanks to Pats, my family, friends and work colleagues, ever since my diagnosis in April I have had the pleasure of having a continual supply of beautiful fresh flowers in our house – it’s been so lovely and they certainly do lift my spirits.

I’d already got my bag organised to take to the hospital the day before. I had drinks, snacks, a magazine, two books (I’m not sure how long I thought we were going to be there!), my iPod and my Macmillan chemotherapy organiser.

imageWe arrived at the day unit at the hospital and I was given a name band to put on my wrist (you’re effectively an out-patient for the time you’re there). The nurse called my name and as we walked over to the unit I told the nurse that it was my first time and that I was very nervous.  They could see that I was upset so tried to allocate me one of the separate treatment rooms rather than being sat in the larger open plan area, but there were none available. The nurses were absolutely amazing, they explained everything that was going to happen and were very reassuring.

The other patients and their companions were all really lovely too. There was an older lady to my left who was there with her husband. She had clearly been through a lot of treatment in her life, but both she and her husband had a very upbeat and positive attitude and her husband was cracking jokes – they really were a very cute and endearing couple.

My nurse explained that she would run some anti-sickness drugs through IV into my PICC line to begin with. Then she laid out the bags of chemotherapy drugs out on her pedestal trolley whilst carefully checking my details against each one. FEC is the name of the chemo infusion given for breast cancer. Fluorouracil (also called 5FU), Epirubicin (also known as the red devil) and Cyclophosphamide. Some of the patients had their chemo drugs in bags that were hooked up on the machine that you’re attached to. Mine came in big syringes that were then plugged into the machine – except the Epirubicin which has to be injected very slowly and manually into the PICC line by the nurse. It felt very surreal seeing the drugs being pumped into the tubes into my body. Well here goes then, there’s no turning back now.

The nurse flushed through my line after the Epirubicin and then continued with the remainder of the syringes until they were all empty and inside me, being pumped around my body. A lady I connected with on one of the cancer support forums said I should try and visualize my body as a garden and the chemo going in is going to kill all the nasty weeds that are pushing the flowers away. They warned me that the Epirubicin would make my pee red – I’d already experienced the blue pee so was getting used to having multi-coloured bodily fluids by now! It took just under three hours and then we were all done. The first one was in and doing it’s thang. We got home and I laid on the sofa as I felt rather exhausted by the whole day’s events.

I had a bagful of anti-sickness and steroid tablets to take at specific times – I made myself a check list of each one and when to take so I could tick off and know what I’d taken and when. I woke up in the early hours of the morning in a night sweat and started to panic that there was something wrong. I took my temperature and all was fine so managed to get back to sleep. I felt quite nauseous for the rest of that week and I couldn’t eat a normal sized meal as it made me feel queasy. I felt tired too and would take a little nap in the afternoon.

They said at the hospital that a pattern would develop with each treatment but I’ve found each one to be slightly different so far. The first one I felt very queasy and couldn’t eat full meals, the second one I was physically sick and lots of my hair started to come out (separate blog coming on that topic alone!). The third one I felt much more tired than the previous two, and the fourth one floored me and really wiped me out.

The day before each of my chemo treatments, I have to go to the hospital to give blood and check that my immune system is strong enough to withstand the next dose of chemotherapy and also see the Oncologist. Most people’s immune systems are around the 5-8 level. In order for chemotherapy to go ahead, the results have to measure 1.0 or higher. The last two occasions mine have been 0.9 so I have had to have my bloods taken again. The hospital are supposed to call and let you know that your bloods are low so that you can go back in for a re-test.

The first time this happened I didn’t know until we’d got to the hospital ready for my chemo appointment at 3pm. This was the day my Mum and Dad had taken me to the hospital for treatment and they already had plans that evening to go out. We had to wait over 2 hours for the blood results to come back and luckily they’d gone up to 1.1 so treatment could proceed. This completely brings it home that chemo is a serious medicine and I’m actually not as well as I think I am sometimes. My dear Dad completely believes he’s jinxed by good old sod’s law, and on this day he was probably right to think so. My treatment then began at 5.30pm and so I wasn’t finished until 7.15pm. A quick pit stop pick up by Pats and we were home by 7.30pm.

Whilst I’ve coped better so far than I initially thought I would on chemo, it’s certainly no walk in the park. I’ve experienced a range of side effects throughout my treatments:

  • Queasiness/nausea
  • Tiredness/lethargy
  • Sickness
  • Teary, sad days
  • Insomnia
  • Fatigue
  • Hair loss
  • Mood swings
  • Watery/gunky eyes
  • Constipation
  • Headaches
  • Diarrhoea
  • Memory loss/chemo brain
  • Tired/achy legs
  • Heart burn

When I catch myself in the mirror I wonder who this person is who stares back at me now. Just over two months ago I had long blonde hair, my skin was slightly tanned from our holiday and I looked reasonably fit and healthy – I felt healthy – and definitely much more confident. Now my nails are going yellow and flaking off and when I look in the mirror I see an ugly, ill, fat, balding, tired old lady staring back at me.

WTFblog3bAs well as the physical side effects, I’ve found it has affected me psychologically and emotionally as well. I have up and down days – they’re mainly up thankfully – but the down days are debilitating. Days where I’ve wanted to hide away from the world – to not see anyone and not let anyone see me. Days where I’ve sobbed and it’s all been too much. I’ve had duvet/sofa days when I feel like I can’t do anything and need to rest.

There is a sense of being on autopilot a lot of the time as I go through treatment as there is a structure with all the appointments. I try not to expect too much of myself and am just taking one day at a time. I don’t know if it’s “chemo brain” but I don’t seem to be able to concentrate for long periods of time and I write myself a little to do list, even if it’s something really simple – a) so I don’t forget and b) so I feel like I’ve achieved something.

I have days when I wonder how this story is going to really pan out and I worry. A lot. I worry about whether it will come back. Will it metastasize? Will stopping Tamoxifen to try for a child make the cancer come back? If I did manage to get pregnant (and that’s a big if) will all the hormones running around my body make it come back? Would I ultimately leave my child motherless and my husband a widowed single parent? It’s the more prominent thought that gets played around in my head at the moment, rather than we’re going to skip off happily into the sunset with our beautiful baby. Then I try and stop that chain of thought. Replace the worries with positive thoughts. One lovely lady I met recently, told me that in a years’ time I’d look back on all of this as a very bad dream/nightmare and that actually positive things will come about from the experience.

I spend an inordinate amount of time reading – mostly blogs, twitter and articles on the web about breast cancer. I’ve found a great deal of comfort from the all the contacts I’ve made with the lovely ladies who read my blog and from connections I’ve made on twitter. Even though we don’t see each other face-to-face, it feels like a good support network. These are women who are going through the same thing, experiencing the same treatment, who are wearing the same t-shirt and know exactly what it feels like to be sat where I am now.

Having cancer and going through treatment is very hard psychologically. There is the fear that comes from being brought closer to your own mortality and the very real and terrifying prospect that the cancer might return. I try to have a positive mind set in respect of whether it’s going to come back or not. I am educating myself to look out for the signs of a recurrence. That’s not thinking negatively, but knowledge is power. I’ve found that unless someone has been diagnosed with cancer themselves, it’s hard for others to really understand the real torment of this fear. But I must have faith in the treatment that I’m having and try my hardest to not let it take over my brain. Sometimes you just have to dig a little deeper, fight a little harder and trust in the journey.

What I do know is that I have the most tremendous love, kindness and unwavering support from my totally amazing hubby, my wonderfully loving and caring family and friends and employers who continue to be generous and completely supportive – all things I am truly grateful for.

Time seems to be ticking by at quite a rate now – I’m actually surprised (and relieved) at how quickly it’s going. I’m now well over half way through my treatment and can start to see the end point of this obstacle course in sight.

One thing is for sure…… cancer? You can c*ck off!

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Image fabulously created by Julia B at Breast Cancer Chat WW @bccww Tuesday night’s 9-10pm GMT(BST), #support #networking. Everyone welcome: Use #BCCWW to join the conversation.

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17 thoughts on “What the FEC?!

  1. Great post Allie, love the way that you’ve blended and woven the factual, emotional and psychological experiences together for us all to understand some of what you’re experiencing. It’s interesting also that your Mum’s experience is naturally a concern to you too and that you are almost mentoring her through.

    Visualisation is a powerful medication too I think

    Rosemary
    x

    Liked by 1 person

  2. Really good post Allie – I too have found support from others ‘in my shoes’ online. I too spend an awful lot of time reading blogs. I too am scared of how the story will pan out. Glad you are over halfway & thankyou for your honesty it helps a lot Dee x

    Liked by 1 person

    1. Thanks Dee, very kind, nice to know it helps in some small way. I read way too much
      – but it’s very hard not to. I think to myself that I should try a ‘digital detox’ for a day each week.. put my phone away and park social media, blogs..reading about breast cancer. I’ve yet to succeed! It’s easy sometimes to focus on the bad and negatives, must try and have faith, hope….and a big sprinkling of good luck xxx

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    1. Thanks, I do hope so! I know everyone has days when they feel and look like rubbish – it’s a catch 22, when I feel up to it to make an effort I do feel better about myself, but also I don’t always feel like putting a wig and make up on all the time. I do still have a wee bit of hair left though so I guess I should be grateful for what I do have! xx

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  3. Allie, I had a lot of support but nothing compares to the support I receive from other patients. There’s power in experience and those who have walked the same path I have.

    I like information too. I read about bc often but not all sources are accurate so be careful, don’t stress yourself out too much. Each case is different. And always ask your Onco questions if in doubt.

    I can’t believe you are almost half way there! Time goes quickly. I am sorry you’ve experienced some side effects. And BTW, it’s OK to cry and feel emotional. It’s all part of the healing.

    Hoping for better days ahead. Feel better soon. xo

    Liked by 1 person

    1. Yes, my friends and family have been so awesome..it’d be a totally different tale without them behind me, but I think it’s natural to find solace in those who relate to exactly how you feel.
      Good point Rebe…just because it’s on the internet it’s clearly not gospel!
      I know I’m so pleased at how quickly it’s going now, the latter part has definitely sped up..a week on Tuesday will be the penultimate one!! 🙂
      Hope you’re doing okay lovely xxx

      Liked by 1 person

  4. I can really relate to your post, thank you for sharing.
    You are right, no one who hasn’t had what we have will ever understand what it is like to face your own mortality and have the fear lurk behind you all day every day. They don’t know what it is like to go from being healthy and young to crumbling before your own eyes!

    You are doing great and you’ve got this. All the best to you xxx

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  5. Oh Allie, you have been so strong though this difficult journey and I’m sure these words, though very humbling will be an inspiration to anyone reading them who is on the same journey as you are. It will soon be behind you and each new day will put it all further behind you, one day at a time. This time it was you who bought a tear to my eye. Not out of sadness but of respect and recognition of the way you are fighting your battle. You have dug far deeper into yourself to find strength you didn’t think you had but I told you it would be there when you needed it. Hope to see you again real soon, Si x

    Liked by 1 person

    1. Bless your heart Si, I can’t tell you how much I’ve appreciated and found comfort in your encouraging words and support these last few months – thank you 🙂 Here’s looking forward to our Friday club back at Spoons real soon xx

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      1. That’s what friends are for 😉 It was an honour to have been able to help and support such a wonderful person. Looking forward to the reinstatement of the Friday spoon club. You, me, noodles and Lou Lou deserve a long lunch to make up for lost time 😃

        Liked by 1 person

  6. Hi Allie
    Your posts on chemo are really helpful. I’m waiting to hear when I will start the treatment and it’s the one that I’m most fearful of. Reading about how you are getting through gives me some comfort that it can be done and with a smile at that!
    You look beautiful in the wig pics-for me the winner is the short one!
    Good luck with the rest of your treatment-you will be in my thoughts.x

    Liked by 1 person

    1. Hey, thanks for taking the time to read my posts, I’m glad they provide some help to you. Chemo is certainly no picnic, and everyone has their own experience with it. I’ve found it tough, and more so in the latter half of my treatment, but manageable. I’ve found that fear of the unknown is much worse than reality – the mind can be a powerful friend or an evil enemy. It’s hard to be positive all the time but trying to keep a positive force will help you through – that and the support of your loved ones x
      I think my shorter wig seems to be a winner for quite a few people – it’s so nice to get feedback and thanks so much for your comforting words. Good luck for your treatment, take care and be kind to yourself xx

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