Taking Stock – Observations from Cycle 1 – Cisplatin and Intravenous 5FU

2 minute read time.

The first thing I thought looking back at Cycle 1, is that I was actually a lot rougher, following the Chemo, than I felt at the time… put another way, I think that by the end of the Cycle, I was feeling an awful lot better than what I felt had become the norm, when coming into treatment… To say this another way; when I was in agonies of acid indigestion and back ache and a pain running up the right hand side of my chest, then into my neck, head and teeth – I was sort of OK with that; it was containable with Paracetamol, Codeine, Omeprazole and ranitidine…. It was just a gradual state of decay that I’d somehow got used to… I hope this makes some sense…

Diet; was crucial for me in the first few days – breakfast was (and still is – only now with the addition of sausage) poached eggs on well chewed light toast – heavily buttered with no salt – horrible Complan for lunch and creamy pasta of some variety for Tea – with tinned ham (need the protein so I’m told)... my handy hint is a generous knob of butter improves most things and also helps with the swallowing – nothing seems to improve the taste of Complan – though I haven’t tried coconut milk which may be worth a shout…

Sleeping; Because this cancer is interfering with the valve between the junction of the oesophagus and stomach, in order to keep everything down, I’m having to sleep on a heap of pillows which I loathe and detest… I tend to sleep in 2 hourly bursts – followed by an hour or 2 awake – though I don’t spend any more elapsed time in bed…

Mood; I should also mention here that the first week dragged horribly – nothing seemed to be happening and I felt like I was looking at 9 weeks of inertia and general thumb twiddling until the next scan - to find out if anything had shrunk/become better contained/done something; an incredibly mind numbing and frustrating thought… But,when, after a week or so, I started feeling an improvement, the next couple of weeks fairly roared past with high spirits – so happy in fact that I’ve spent far more than I should on Interflora for my vintage Aunts birthday… hopefully a good investment though!  There you go – a fine example of positive planning!

 As I mentioned, after day 7, things started to improve dramatically – most of the pain went, swallowing became a lot easier and my head cleared a little - though I’m finding that I can only concentrate in hourly bursts; by 3 in the afternoon I need a power nap for an hour or so… possibly more.

When Cycle 2 appeared on Friday just gone - I felt roughly the same as I did before I first went in to see Daktari about the small problem I had swallowing last year… so hurrah for that – something is definitely happening – whether it’s happening enough remains to be seen of course…

Anonymous
  • FormerMember
    FormerMember

    Andy, this pretty much describes how my Dad was feeling for the first few days.

    He still wakes in the night and is having to sleep alone as he is quite restless.

    He's definitely turned a corner now and played the full 18 holes today, along with eating beef for dinner and 2 pieces of toast for breakfast this morning! Which I witnessed first hand, albeit cut up quite small.

    He has another week before his second cycle begins, so I hope that he doesn't have a rough few days again directly after, although, I think in hindsight, it wasn't as bad as it could have been, and he managed to avoid sickness or losing any unnecessary bodily fluids, apologies for the honesty!

    Some of his hair has started to fall out a little, although, he demonstrated this to me by proudly pulling some out and saying "look at this!" So I think he will take that in his stride.

    Hoping for a successful and comfortable second cycle for you both.

    Amy

  • FormerMember
    FormerMember

    Amy,

    A hat's what's needed - I haven't been brave enough to wear mine in anger yet - but it's getting that way!

    I'm pretty sure it's just going to happen in cycles - which is fine if you can plan for it - just don't book any tournaments for the first week after a day in the chair...

    Beef - don't make me jealous - I'm back on the creamy pasta for a bit... but hoping that I can get back onto food a bit quicker this time now I know what to expect... you've reminded me - I put on 4kg between cycles - should have added it to the blog - might have to rein it in on those foxs crunch cremes...

    It's not really been as bad so far comparing C1 to C2 - I'm pretty sure something's happening - just not sure what yet...

    All the best

  • FormerMember
    FormerMember

    I'm just at the end of cycle 2. I can totally relate to how you felt cycle 1. Never felt so tired or sick for about 5 days then it just lifted. Cycle 2 wasn't as bad sickness wise, but I'm definitely more tired this time round and the dog took longer to lift. Probably didn't help that I was fighting off a flu selfishly brought into the house by my 4 year old...thank God for the flu jag. My girlfriend was floored with a 40 degree temperature. I just got a bit of a cough :)

    Cycle 3 starts Friday. Hope it's my last

  • FormerMember
    FormerMember

    Ha fog not dog

  • FormerMember
    FormerMember

    When I say beef, I mean slow cooked until almost disintegrated, but I still see this as a win!

    My Dads back to making light of the situation. Which disappeared for a while, but I'm glad his positivity has come back because selfishly it's what keeps us all going!

    Hopefully C2 will carry on this way for you.

    Good to hear from you Graeme! I hope C3 is your last too. Have they said any more about the op to you?

    Have either of you been told about any scans you may have to have at any point during the cycles?

    My parents are unsure what they've been told but remember a scan of some sort being mentioned.

    Amy