No, it’s not chemotherapy, but …

… it’s crushing exhaustion, aching bones, rigours, a barely there appetite, heart palpitations, diarrhoea, nausea, seizing muscles and I can’t seem to get enough sleep. Most mornings it’s a struggle to even sit up in bed, mix my antibiotics and push them through my CV line.

‘Antibiotics?’ I hear you say. Yes – antibiotics. Whenever I get a lung infection and have to have a very obvious CV line indelicately threaded into my jugular and stitched onto my neck, people look at me and assume the worst. I’ve heard people whisper, ‘oh, she must be on chemo,’ or ‘She must be on chemo where she doesn’t lose her hair – how wonderful’, ‘I wonder how long she’s had cancer for?’ and worst of all, ‘I wonder how long she has left?’

For the record, I don’t have cancer – not this year, anyway. But when people find out that I’m on an antibiotic regime and not chemotherapy, they immediately express their relief and tell me that they’re glad it’s ‘nothing too serious’. I guess it’s not ‘too serious’ until the antibiotics stop working and I die.

Right now, I’m on three antibiotics: Meropenem, Cephalothin and Tobramycin. Twice a week I have blood tests done to see if my Tobramycin level is too high, and for the last week, it has been. High Tobra levels can send me into kidney and liver failure and affect my hearing to the point of going permanently deaf. Before my transplant, my levels were so high, I was falling over from vertigo, headaches and tinnitus. That’s not before the nausea, diarrhoea and rashes. And that’s just one antibiotic.

Tobrymycin has left me a shell of who I was seven days ago. I’m barely getting around the house and the need to throw up is never far away. I can’t go shopping because this lethargy has me on such a short leash, and I’m afraid of shitting myself in public, so I had my groceries delivered last night. I was too tired to put them away. Again – Tobra is just one antibiotic.

Meropenem and Cephalothin can also send me into renal failure and I’ve had consistent nausea and diarrhoea. For the first four days of IV’s – and even now – I couldn’t do a solid shit, was dosed up on fentanyl for pleurisy and had violent sweats and the vomits. But hey … it’s not chemo, is it?

17 thoughts on “No, it’s not chemotherapy, but …

  1. bloody hell.
    what fun choices you get to make – die of infection or risk renal & liver failure and deafness, with certain nausea, weakness, rashes & diarrhoea in the meantime.
    what doesn’t kill you makes you feel like crap, hey? I really hope your lungs are free of infection soon so you can get off those antibiotics.

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    1. ‘What doesn’t kill you makes you feel like crap’ – YES! That analogy about what doesn’t kill you making you stronger? Not so sure about that one … The lungs are looking much better on x-ray and my lung function is great – it’s just the treatment taking it’s toll xoxo

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  2. THANKYOU,sick of people saying the exact same thing with my daughter,(phew its not chemo you will be alright).People dont understand that this has been life for cf sufferers,and a shortened life,and not a few months of treatment.Keep strong carly xx

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    1. Thanks for your comment, Julie – it’s much appreciated 🙂 The assumption that anyone who looks ‘sick’ has cancer has long annoyed me. I’ve had cancer, too and it was awful, but when society compares illnesses (particularly right behind your back or in your face), it has the propensity to piss. me. off. My youngest nephew has asthma and people make such stark generalisations about his condition. A couple of weeks ago, he was running around like a maniac on his birthday. Two days later, he was in the back of an ambulance being rushed to hospital, practically in respiratory arrest. C.F, like asthma can turn on a dime and it can be scary as f**k. There’s no trajectory for C.F, whereas there usually is with cancer. C.F, as you know, has NO cure. And it sucks xoxo

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      1. well said 🙂 I have shared this story and it is funny only one person liked it,my mum,it is amazing how many people get p***ed off when you bring cancer up,I have tried to explain to people most cancers have a great survival rate and their illness is usually not long term,whereas CF is for life and a very limited and painful,lonely life it is.I can talk about cancer as most of my relatives have had cancer and I have seen what both illnesses can do.xx

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  3. Carly! Have just found your blog and I could not have written this post better myself. People get Cancer, they don’t get CF. They don’t get that CF kids turn into CF adults and despite endless courses of IV’s it doesn’t really make us better. There are no romantic survival stories with CF and just because we live with these things day in, day out doesn’t mean we are just used to it! Love your work, look forward to following you. X

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    1. Cheers Jess! I’ve had a really good read of your blog and it’s just *beautiful* 🙂 Cancer is an ‘acquired’ dis-ease, while C.F is there from day one and never goes into remission, but I’m not trying to compare illnesses, because everyones experience of any illness is different.

      I had cancer in 2007, but I didn’t have to have chemo. What I did have was a marathon seven hour surgery which involved peeling my vagina from clit to crack, extensive skin grafting and an ileostomy (poo bag) for three months. That experience was almost as difficult as my transplant and the surgery very nearly killed me. So while I didn’t have chemo, I’m lucky to have survived what my poor body was subjected to.

      Transplant is also not a cure. Upon hearing that I’ve had a transplant, I’m often asked ‘so you *had* C.F?’ Even by med students! WTF? Much of it is ignorance when it comes to Cystic Fibrosis, but I find that it’s rarely misguided and that people are just being kind 🙂 Now, I want to see more of your wedding photos!! xoxo

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  4. In all fairness if they want to get picky about chemo… Antibiotics at this level ARE chemo. Sometimes they are WORSE than Chemo. As Psuedomonas can be worse than a lung cancer cell. It shields itself from the chemo. And continues on. So if the naysayers want to compare apples to oranges, bring it on.

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    1. Jules – you’re absolutely spot on. Pseudomonas is a bastard of a bug, and to add insult to injury, I’ve shown up staph in my sputum. Here’s hoping we can get rid of it. It’s not MRSA (thankfully), but boy am I pissed off with my body right now! xoxo

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  5. Thanks for posting this Carly, it gets the message across really well, my daughter suffers from cf and has just been admitted to hossy with psuedo, it scares me to see her so pumped full of antibs, her tobra levels were too high yesterday too so they stopped shoving this into her. Just hope she can get back to her ‘normal’ lung function. Stay strong and keep hitting hard.

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    1. Thanks for stopping by, Steve 🙂 I’m so sorry to hear your girl’s in hospital, but I’m sure she’s a fighter and will have this beat in no time. Tobramycin has never been so horrible – what an insidious and evil antibiotic. How old is your daughter? She’ll be fighting fit in no time 🙂

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  6. Hello my beautiful friend,
    I’m so sad to see on this page how sick you have been…. are you on the mend?? I went to find you on Facebook (the first time I have been on there for about a year!) and I found a message from you from back in September. Then I found you are no longer on Facebook so Googled you to find you here!!…… Like you I have been pretty unwell lately – I have had 5 hospital admissions since last October….. but I’m back on track now…. hopefully you are too – sounds like you have been through hell and back! YOU POOR THING!……. I feel so sad that we have not seen each other for so long – my life has been quite a mess since 2011 so I’m sorry that I’ve been so slack. I hope we can catch up very soon…. if you are not well enough to venture out I can come and see you at home. Have you moved?? Highgate Hill?? Are you living by yourself or with your parents?? Oh, and by the way, I HEAR WHAT YOU ARE SAYING ABOVE!!!….. Yes, there is a LOT more sympathy and care out there for people with cancer, even if it is AQUIRED through someone’s own choices to smoke or eat too much junk food!!…… While cancer is a HORRIBLE disease and research and funding for it are imperitive, EVERYONE wants to donate their money and care to cancer while other less “popular” diseases (like CF and mental health) get the dregs. I find it hard to accept that the Governmnet can afford high speed broadband when our health system is falling apart and areas of health are so neglected.
    Anyway, enough whingeing…. I could go on about that all day!!…. Please let me know when you are well wnough to catch up for a coffe and chat!!

    Love you Carly.
    Mary. xxx
    (my new mobile 0481935221)

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  7. I do not even know how I stumbled across your work, Carly-Jay, but I’m so glad I did! You’re you’re going to a
    famous blogger if you aren’t already. Cheers, and keep writing 🙂 We need more honest bloggers who are prepared to tell the truth!

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