Goodbye Red Week

The last red week is over. I won’t lie, it was the worst one yet. In fact, it was more like red ten days and I only really felt myself again yesterday. During the first four days I was overwhelmed by an all senses enducing nausea. People talking to me, me talking to people, sunlight daring to shine, street noise, being touched, it all made me want to vomit. My neighbour hearing me describe it this way said it sounded akin to when he gets a severe migraine. I’ve never had one of those but maybe if you have, you get the picture. I basically just have to hole up in Lilah’s bedroom and wait for it all to stop. After it lifted, it was just plain old nausea. I made the mistake after a week, you know with it being called red ‘week’, of attempting to leave the house. We went to the allotment and after walking up the 20 metre hill (with several pauses for breath) to the plot, I up-chucked in the flowerbed. But vomit is a fertiliser right?

Smack bang in the middle of red week I had to start injecting myself with GCSF to boost my non-existent immune system. In previous cycles, the side effects have been manageable with ibuprofen and old lady shuffling movements around the house. I get chills, not John Tavolta grease lightning style ones. Fevery, shivery chills that make me shake uncontrollably but without the accompanying normal high body temperature. I have to watch this carefully because it can make me miss a real fever. Then I get a dull ache in my bones in the pelvis and lower back that if I move too fast can turn into agonising jolts. They are centred in this region of my body because that’s where my bone marrow makes all the weeny white blood cells that make up my immune system. When the GCSF starts doing its thing, my bone marrow expands and among other things I don’t really understand to do with neurons called noiceptors, sends panicky messages to my brain.

This time, the pain wasn’t manageable. On the worst night, as I made the unreasonable attempt to turn over in bed, it felt like my skeleton sank slowly to one side of my body and ended up in a pile at the hip slicing its way through my flesh on the journey. My leg muscles were feeling left out of the pain party, so they joined in. Then the chills started and every time I shook, a wave of pain would ripple out from my pelvis up my spine and down my legs. It reduced me to a blubbery mess. Luckily I have the best husband ever and he rushed in to soothe me with massage oil, loving whispers and some serious spooning until I finally fell asleep.

That’s all done now. I will never have to feel that way again. There is more discomfort to come I’m sure and probably more pain. But THAT particular pain. That’s done. I made it to the allotment three days after that, climbed that 20 metre hill without pause and didn’t vomit in the flowerbed. A win.

wpid-wp-1434347685391.jpegNow that I’m finished with that part of the cycle, my head is clearer and I’ve been contemplating the next phase. I have my appointment with my surgeon in two days to decide what kind of surgery I’ll be having, a lumpectomy or a mastectomy. This will all depend on where the lump is and the size. If it’s too big still and in an awkward place, then I’ll probably have to get the whole boob removed. This is where having enormous boobies will come in handy for once as there’s more breast tissue to work with. But it’s all still very uncertain and depends on the results of the last MRI and a clinical examination on the day. I have been attempting to meditate on both possibilities for a few days now. Not literally meditate because I am unskilled in that regard. Just thinking on it. Trying to accept both and failing. I realise yesterday that it’s impossible to accept things when you don’t know for sure what they are. So I decided to accept the uncertainty instead. I’ll accept what comes, when it comes.

This is where I’m at now. I’m looking forward to a whole day without pain, free of nausea. A day to spend with my family, enjoying the normal movement of my body, speaking, eating, being. Today will be a good day.

9 thoughts on “Goodbye Red Week

  1. Oooooffff, I feel for you. What you’ve been through eh! Thank God/s it was the last round right? Imagine (I bet you have) if it had been the first and you’d thought you’d have five more of those hell trips.
    Preparing for uncertainty is an art in itself. Especially when it’s about serious medicine. Not just whether your mother- and sister-in-law will need that cottage at your wedding or if you need to cancel the booking. That’s the uncertainty I’m supporting at the moment, as a wedding family member!
    You’re strong so far! Wishing you more abundance of strength in the surgery discussions!!
    Linda

  2. Heidi

    Aw congrats Linda on upcoming nuptials! It is a shame you can’t just turn up to your own wedding and someone else sorted all the details out ; ) Yes, you’re right though that knowing this was the last time I ever had to feel like this made the whole thing bearable at the darkest moments. Also I didn’t mention coz I didn’t want it to seem like a promotional post to get people to donate, but the GoFundMe whip round that Kat and Karen set up was vital in keeping my spirits firmly up. I was pretty overwhelmed by the amazing generosity and love that came in symbolically through cash. Anyway, indeed last round. Last pain, last nausea. xxxx

  3. Caroline

    You are *amazing*! Your blog brought a tear to my eye and I just wanted to give you a mahoosive hug throughout as I was reading it. You are going through such pain and fear with extraordinary bravery and resilience. I won’t say keep going as that’s just irritating! You are allowed to cave in and blub even when you’re such a superheroine! Sending you all our love. Can’t wait to see you soon and hug you in person. C xxxxxxx

    1. Heidi

      Thank you darling woman. I wasn’t sure whether to share the darker stuff or not. Often when I’m in the middle of those times I don’t blog so it can become a little invisible. I felt in the end that it would be good to reflect after the fact. Just to give the whole sorry picture. I can’t wait to see you too. Let’s make a plan! xxxx

  4. Sokari

    Awful awful – I really didn’t expect this for you! I thought after 15 years things would be much improved, clearly not. I don’t understand why not. I cried when I read this, cried for you for myself and everyone who has to live through chemotherapy – it’s summer now I hope you can begin to enjoy the allotment and beach with Lilah and Adam xx

    1. Heidi

      Ah sweetness thank you for your tears. I cried when reading of them. I guess the nature of chemo is such that there’s not much difference that time makes. It’s so brutal a medicine. Perhaps at some future point, medicine targeted at the cancer cells themselves will provide less harsh solutions. But we’re not there yet : (

  5. Lisa

    What a hellish experience, I am so sorry that you had to endure it all. Like you, I hope that future cancer treatments will be more targeted and less poisonously harsh to the entire body. But yay for being finished with chemo! Now it’s on to surgery, a lovely summer, and time with your family while NOT feeling nauseous.

    1. Heidi

      Thanks Lisa! I wish it for you too. I think we’re at a transition moment because I also do have a targeted drug called Herceptin. So perhaps we’re the last generation that will have to deal with chemo..xxx

  6. Karen

    I am so very sad and sorry to hear what you have been through in the last two weeks, but also so grateful to you for telling us. I think it’s so important that we as your friends can understand something of the realities of what you have been going through. And pain is such a difficult thing to communicate to other people. Your description of it was very evocative of what must have been a horrendous nightmare. As you say, thank goodness you don’t have to have THAT pain again! Maybe this is a silly thing to say, but I’ll give it a go – I think at least surgical pain is a kind of clean pain – at least it means your body has been fixed and just needs to rest and be looked after and it will repair itself. You have already come through so much – you can do this next step. You are doing an AMAZING job. I am sending you so much love, and will be thinking of you all tomorrow when you have your appointment. xxxxxxxxxxxxxxxxxxxx

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