The Unspoken Rule – Chemotherapy Days (part 1)

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Before going for chemotherapy I did the one thing that you are told not to do.  I researched on the Internet, desperately trying to find something that would tell me what it would actually feel like.

It turns out that it’s difficult to explain what chemo feels like. Everyone’s experience is different (it’s true) and the cocktail of drugs that you can be given varies – everyone reacts differently.

But that’s not really what you want to hear when you are trying to prepare yourself for a round of chemo.  You just need to know.

In fairness my chemotherapy nurse had offered to put me in touch with others of my own age, those who had been though the experience (a good variety too – those who had both good and bad experiences) but in all honesty, I am quite a private person – and I was not ready to talk to others at that point.

Personally I find reading rather than talking is easier, so this is my feeble attempt at explaining my treatment.

Chemo Session #1

Lisa Lynch made me laugh, mainly because, like her I too rocked up to my first chemo session in trendy jeans, a nice top – a touch of makeup (this is rare as a mum) and a positive attitude.  Announcing my arrival to the receptionist in the chemotherapy ward like it was something I was actually looking forward to (I think we both knew I wasn’t).

I had done all the things that I had researched – drank tonnes of water, visited the dentist, drank yet more water and eaten good food beforehand.  The first dose wasn’t as bad as I thought, although that may have been due to the positive mindset I tried to adopt (and also perhaps your body is stronger the first time).

The ward was cheery, as were the nurses, I sat in a nice purple chair and was administered EC (Epirubicin and Chlorophosphomide) manually. As soon as it was all over you are sent home to deal with the aftermath of how chemotherapy drugs truly affect your body…

The best I can describe it as is a VERY bad hangover.  Your head feels like it might explode from the pressure, your limbs ache a bit like the day before you catch the flu, and the nausea is constant even with the tablets.  The tiredness is overwhelming at times – it is true that chemo tiredness makes you too tired to even tolerate lying down.  You are hungry, but not hungry.  Thirsty, but not thirsty.  You have to drink to try to flush the drugs out of your system if you can, which means constant visits to the toilet.  You shake, go hot and cold and generally feel crap.

Luckily I didn’t actually throw up or have to be re-admitted to hospital because of infection – so I am all too aware that my account of this is not as graphic as it could have been;  yet that is how it happened to me.  A true, honest account.

At this point I have to say that I feel quite bad in saying it how it really is, mainly because it seems like an ‘unspoken rule’ that no- one should talk about.  It’s a bit like not telling other expecting mums what it really feels like to go through labour.  It is quite an inbuilt British way I find, that we are brought up to feel as if we shouldn’t talk about illness or pain, and just shoulder it and soldier on.

– but then if no one ever says?

Chemo Session #2

The following doses did tend to get gradually harder – all the same experience but your body starts to question what the hell you are doing to it.  This time I was more prepared, leggings on with a nice top accompanied with a fleecy blanket and several other helpful items in my ‘chemo bag’ that I thought might be helpful, all things I had forgotten last time (nice smelling conditioner, a book, hair things and snacks for the ever – patient husband keeping me company).

It is probably a good time to explain the Cold Cap at this point.  You are offered (but it’s not compulsory) the option of trying to preserve your hair.  The Cold Cap is a helmet with a cold ice coil inside placed onto your head, with the aim to shrink your hair follicles whist you recieve chemotherapy.  This is a clever little invention, and can in some cases, prevent or minimise hair loss.  I tried it and because I could tolerate it (4 hours of tolerating it per session) I have persevered.  I can honestly say that it was the hardest part of my chemotherapy experience, however it has saved my hair so ‘every cloud has a silver lining’ I guess.

The second dose was also in the afternoon (the first was a morning session) so the anti-sickness drugs I took when I got home proceeded in keeping me up all night, through the nausea (it is fair to say that I did not look good the following day). Sleep is key.

Chemo Session #3

Try as I might, (and I am trying to portray the positives in all of this) I have to honestly say that I worked myself up before my third round.  It is my own fault, we all have ‘off days’ and this day all the little things seemed to go wrong for me.

Now dressed in leggings, non matching jumper, hair thrown up into a bobble and not looking particularly good I had forgotten my hair things, my nice smelling conditioner and other bits and pieces needed.  I had remembered my essential fleece (bought by a kind friend) to keep me warm and obviously my now long suffering husband!  The dread of the nausea and the cold cap meant that I was snappy and irritable and generally probably not nice to be around.

The hospital had mislabelled my bloods that are required for the ‘pass’ that you need to have your next dose, so we went in to hospital hours early to have everything that I had already gone to great lengths to do the day before – all over again.

The session itself wasn’t that bad, I say this because it was no different to the previous two sessions – however the administration of the chemotherapy seemed a little quicker this time, to the detriment of my veins I later found out.

This was the day I really wanted to draw the curtains around my bay (the wards are generally open) because I just wanted some privacy.

I am glad that I didn’t draw my curtain that day, because a lovely lady sitting opposite me later mentioned that she had been in hospital since 8am and that this was her second time (I presume she meant second cancer and experience of chemo).  She had been merrily chatting to a lady sitting in the next bay to her, who she had obviously befriended during previous sessions and then later (to my relief) her daughter came to keep her company aswell.  That lady made me realise that I needed to ‘snap out’ of feeling sorry for myself, as we were all sitting there in the same situation, and some worse than others.

Chemotherapy is shitty, there’s no two ways about it BUT and here is the big but, it is an extremely humbling process and one I intend to learn from.

One thought on “The Unspoken Rule – Chemotherapy Days (part 1)

  1. This is hard reading Dee, you’ve been through so much. Appreciate you sharing this – it’s good to have an honest account of what this is going to actually feel like. Good luck for the remainder of your treatment. Stay strong xx

    Like

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