Chemo Round 1. With Feelings.

A week ago today, Thursday 28 June 2012 I had my first dose of chemotherapy, which is Avastin and Irinotecan.

So far the plan is to have a dose of each type every three weeks for the next twelve weeks.  I’ll have four sessions to start with.  Then after that I’ll have some radiotherapy and a scan to see how I am responding to chemotherapy.  There’s a chance I might need further chemotherapy, but that’s something I’m shelving for now, at least until the scans are done.

I arrived at the chemo ward for 8:30am as instructed by my team and was shown to my room where I’d have my treatment.  This time wasn’t in the chemo lounge, but in my own room.  Apparently it’s because of the type of chemo I’m having.  Not too fussed about being on my own, at least it means I can have some privacy when needed.  It does mean though that my Mum manages to get total control of the remote control.  Jeremy Kyle is bad enough on a regular day…

First task of the day was a urine sample to check my protein levels.  All done and sorted and OK because then just before midday a nurse appeared with a heat pad and wrapped my hand in it.  A cannular was put into my vein on my left hand just across the top of my wrist and was told kick off would be any time soon.  To start with I had a blast of Dexamethasone which is a steroid to help with sickness.  Then my IV was hooked up and suddenly the nurse had let Avastin and a bag of fluids run free through my veins.

Towards the end of the Avastin IV (1 hour) I started to feel very sleepy and fell in and out of naps, but unfortunately every time I was about to drop off I felt like I was falling so I’d wake with a start.  Then suddenly the bleeping was going off and I knew it was over.  First dose of Avastin well and truly in.  Quick break then it was on to Irinotecan.  An old enemy.  I was given more anti sickness in the form of Emend and then another load of anti sickness through IV.  Half an hour later the nurse was back to give me an injection of Atropane in my arm – stung like a bitch, but apparently it will help keep my stomach calm because the Irinotecan could send things a bit mental.

Then I was wired up to Irinotecan and an hour later it would all be done.

Felt reasonably OK for a bit, but did notice my stomach stir a little and a heat wave did pass through me.  My feet started to sweat and suddenly it was like I’d just got out of the bath.  Lovely.  Towards the end of the IV my stomach was awake and indigestion had set in.  Mint tea seemed to ease it, but there were definite waves of nausea happening.

Once the cannular was removed from my wrist and I was free to leave it was then I noticed just how woozy I felt.  I felt drunk.  I was slurring my words and just about managing to keep a grip on reality.  I swear I floated out of the chemo ward.  Once in the car the nausea really started and that remained until about midnight that night along with a stinker of a headache.

What other side effects have I experienced?  Tiredness, but the sort of tiredness I’d forgotten about.  It’s like someone just pushes my eyelids closed and I have no say over it.  My original surgery site/where my rectum should be constantly hurts.  My eye sight is suffering – I’m struggling to focus on things which I’d usually see just fine.  My eyes feel gritty and cloudy.  I’ve been told this will go and not to waste money on eye tests.  Shall just live in specs.  I’ve started waking during the night with night sweats and hot flushes – this will be the menopause. Nausea, constipation, bad stomach, sweaty feet, bleeding when going to the toilet, feel like I’m being surrounded by a chemical like smell which I can’t escape.  In my mouth, nose etc. My mouth feels slightly metal like, and at times numb.  I’ve not lost my appetite completely – but I’ve noticed I can’t really stomach sweet stuff.  Have been making sure I eat though.  Have lost 5lbs in weight which I’m not too happy about.

Compared to last time, things seem a bit better this time. I’ve just got to take each day as it comes.  My biggest struggle at the moment seems to be what’s going on in my mind.

I’ve completely withdrawn myself from people and I’m really struggling to say how I feel.  I feel like I don’t want to bore people with my “not feeling too great” replies and things, so I tend to just say I’m OK.  I don’t want to admit I feel quite so rough all ready and the thought that there’s weeks of this to come has hit me a bit.

Someone pointed out to me the other day that I very rarely admit how scared I am or even just how upset I might be, that’s probably because of how I’ve been brought up.  We aren’t a close family or particularly big on talking about our feelings.  Since finding out my cancer has returned I’ve had one hug each off my parent’s. Then life went back to normal.  I guess we all have ways of coping.

Last time I just got on with it, probably because I didn’t have a clue about what was to happen.  This time it hurts just a little bit more.  It hurts that I’m going to lose my hair again.  My eyelashes and my eyebrows.  It hurts that I’ll be left unable to have children and it hurts even more that they can’t cut this cancer out of me this time.  It hurts that it’s fucking with my life again.

I didn’t want this to be a depressing post but then again you aren’t getting positivity out of me tonight.  I’d actually just like to be allowed to be unhappy, upset and heartbroken without worrying about what everyone else around me is thinking.  I don’t want to be called strong or brave.  I don’t want people to say to me “You’ll get through it, you’re strong” – what I’d actually like is someone to just say “That’s really shit, Hannah” and give me a hug.

Rant done now.  Normal service back soon.  Maybe.

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9 thoughts on “Chemo Round 1. With Feelings.

  1. Hannah that was very honest and open. I feel for you sooo much I’m so sorry this has happened again the chemo sounds tough and the weeks ahead hard. We’re all here to listen and talk if you need it xxx

  2. I’m breaking my heart for you. I have def learnt that it is ok to feel fed up, angry, cross, let down, scared – we can’t be positive all the time. It is a scary time and you are allowed to feel how u feel. I am sending you HUGE hugs, just wish I could do in real life xxx

  3. It is shit. But you are strong, and you will get through it. And we’re all here cheering you on to make sure you do.

    Of course it won’t stop you feeling down, or scared. And it certainly won’t make the chemo any easier. And yes, you’ll lose your hair again. But it will grow back again (unlike mine, which vanished of its own accord at age 24!) And if nothing else, it gives you a great excuse to buy some great head-scarves!

    As for not wanting to tell people how you are, and what you are feeling, I understand. And remember that you don’t have to say anything. See http://richardappleby.wordpress.com/2009/02/18/etiquette-and-conventions/ for my take on that.

    The no-kids thing is a complete bitch. Maybe you can bank some eggs for the future? Or perhaps adoption may be an answer? But those options both mean you have to beat this disease.

    So let’s get that out of the way first. Time to fight. Start by getting the remote control off your Mum. No-one should be forced to watch Jeremy Kyle.

  4. Hannah, if I could I would give you a big hug, this b…. illness is awful, people do not know what it is like unless they have had it. I hated being told I was on a journey (for me journeys are nice things) …. or that I was so positive it would all be OK.

    It is shit Hannah ….. Big virtual hug

    Susan

    X

    • Hi Susan

      Thank you for your message and for saying how it is. It really is shit.

      I’m with you about the journey thing. There are a lot of people currently on a “journey” – I wouldn’t mind, but for me, like you a journey is a nice thing and usually involves too many bags, a plane, car, or perhaps a hideous train journey. But there’s usually lots of fun along the way. THis isn’t fun. I’m often told to keep positive and that will get me through – maybe this is where all the Oncologists are going wrong?! They should be writing prescriptions for positivity and strength and bravery. I’m going to have a word at my next dose of chemo and suggest we try it and scrap the hardcore drugs. HA. My Oncologist would probably have me sectioned there and then. Anyway, I’ll stop ranting now. When I’m in a better frame of mind I’m all for positivity, but I’m also very aware that this disease is a total bastard with no limits, and it has it’s own blood supply – so me thinking happy thoughts might not just cut the mustard.

      Thank you for the hugs, lovely. I’ll let you into a secret – I’m going to blog about an actual journey – a good one!

      Hannah xx

  5. Ok, I agree with Richard; get that remote back now! People who watch that stuff should not be allowed to inflict it upon those who rightfully deserve better, and anyway, she can only watch it because you’re in the hospital anway, so it’s yours. Quick, grab it, and lie on top of it feigning sleep.

    As for the crap, rant away. As if you haven’t got enough to think about, the children issue sticks itself in there too. Have they offered you egg-retrieval? Anything at all? Blasted thing.

    I’ll rant away with you, or for you when you’re having an off day. Oh for a magic wand. Sending you a hug over the webisphere, and an offer to let tyres down, should you ever require some help.

    Cate x

    • Thank you for your message Cate. I’ve come up with a plan for my next chemo dose. Instead of my mum a very lovely friend of mine is going to keep me company. We are going to be so busy gossiping, painting our nails and generally ignoring the cancer bulls*it that there will be no time for Mr Kyle!

      Because I’m not married, I’m limited with what they can do for me egg-wise. We also weren’t sure if things were working anyway due to the last lot of treatment – my body hadn’t even settled down enough for me to investigate, plus it wasn’t really a priority. Instead we are sugar coating my ovaries using an implant called Zoladex – this should hopefully protect my ovaries from chemotherapy. There’s no guarantees but it’s worth a shot. It’ll bring on an early menopause but with some HRT I should be able to keep the side effects to a minimum. Once my treatment is over and the Zoladex stops my body re adjusts and should hopefully all kick back into gear – and maybe produce eggs if it’s not totally traumatised now. Time will tell.

      Thank you for the hugs and kind words. It’s always nice to have someone to rant with. I’m hoping I’ve got over my rant now.

      Hannah xx

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