Dreading next infusion

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Hello,  I have asked a couple of questions on here,  but don't know where or how to find out if anyone has replied to me - any tips?  I'm a 76-yr-old woman,  living on my own, not very good at e-technology!  I had surgery-  a right hemicolectomy on 5th December.  I am now on my 2nd cycle of CAPOX.  I feel nauseous all the time.  As well as the peripheral neuropathy in my fingers,  I am cold and tired, & I am having a lot of trouble sleeping.  My consultant said that to lessen the side-effects,  I must ask the nurses to take longer over the infusion of Oxaliplatin.  However,  the hospital is short-staffed,  and there are so many patients having infusions,  that this does not seem to be possible.  

My next infusion is booked for the afternoon of 1st April (Easter Monday),  & I'm dreading it.  Last time, I had to wait for 3 hours after my appointment time,  for the infusion to begin.  There was no way the nurses could do the infusion slowly,  as the ward was supposed to close at 7pm,  and by then it was 5pm.  I could not move my arm for a few days,  and now,15 days later, my arm is still bruised and painful. I imagine that the staff will be even more hard-pressed on Bank Holiday 1st April,  so that they will not be able to slow down the infusion,  but more likely to speed it up!

Is it worth doing this?  I was diagnosed with deficient MMR as well as BRAF mutation.  Has anyone had any similar diagnoses or experiences?

  • Hi  and a warm welcome to the board. I’m sorry to hear that you’re struggling with the chemo and I remember being in the same situation - the nurses told me that slowing the infusion down would prolong the discomfort but I’ve read others have found it to be beneficial? Like you I think it was more a time issue knowing they had to ‘free up the chair’ for the next patient. So here’s a few ideas from me that could be worth trying

    1. Ask your consultant to tell the nurses that it needs to done over a longer time and then get a morning appointment 

    2. Ask them to put a heat pad on your arm before and during the infusion. Keep a heat pad at home (like those ones you can pop in the microwave) to use for the first few days after.

    3. Ask for a different antisickness med. They tend to start you on the cheapest brand but it doesn’t suit everyone so ask to try a different one - I think I’ve read that Emend is very good.

    4. If the painful arm continues then ask for a picc line. This is a cannula that stays in your upper arm throughout your treatment. It is painless to fit and although you may still experience the neuropathy you won’t havung the bruising and feel like your arm has been beaten with stinging nettles.

    5. Keep your hands and feet well moisturised and wear gloves when touching anything cold. Show the nurses if your hands or soles of your feet start to redden as PN can continue to get worse after stopping treatment and can be permanent.

    6. Tiredness is a side effect of chemo so listen to your body and don’t try and carry on as normal if you don’t feel up to it? Wrap up warm and rest when you need to. Chemo is tough so look after yourself and make a few temporary changes to your life if necessary eg. Online supermarket shopping, ready made meals etc. Make life as easy as possible for yourself for a couple of months

    I appreciate that it’s hard to be ‘pushy’ sometimes but you know how you’re feeling and you shouldn’t be struggling when there are options to relieve some of the side effects? Talk to the nurses and don’t feel like you cant because they’re too busy - it’s your health and body so have a chat with them while they’re putting the cannula in and hopefully this next session will be a bit better.

    Hope this helps

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thank you Karen for your helpful reply.  I shall try your ideas!

  • Hello Karen

    I am sending you warm hugs and lots of love. I hope you feel better soon.

  • Thankyou  I maybe should have mentioned that this was back in 2017 See no evil x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm