1st week

Are you on weekly Chemo? and also are you taking all the medication or have you been given loads of anti sickness things, I think I had three or four the first two days and slowly going down till day five or six.

Hi Kelly. Oh God I remember this. From day 4 to day 8 after 1st chemo I felt totally nauseous and couldn’t eat any food at all, despite trying desperately.(No PEG  - no time to fit one). It was devastating and my husband said later that he didn’t see me completing 2 weeks of treatment, never mind the 7 weeks I was due to have! But don’t despair - you need to be proactive. Get on the phone to the team  - you probably have already but do it again. I phoned the emergency helpline 3 times over the 4 days and got platitudes, despite carefully explaining that I was a H&N cancer patient who had been told I must continue to eat at all costs. The following week, once the nausea passed (it will pass) I was practically told off by the Oncologist for not letting them know over the weekend that I had been struggling to eat!! She said I should have been admitted and given anti-sickness drugs IV. She then changed and increased the steroids for my subsequent 2 chemos and I DIDNT HAVE ANY NAUSEA after the second & third chemos.

Message is - if you cannot eat due to nausea you need admitting. the nurse answering the helpline phone may not know all that much about H&N cancer, so be prepared to be pushy (or get someone else to be pushy for you). And be reassured - as horrible as you feel now, it will improve, hopefully very quickly and should not continue throughout treatment. However, do also ask about an increased dose of steroids next time - you will already be having lots of anti-sickness meds but they might increase those too.

Big hugs and fingers crossed it gets better very quickly Kelly,

Hilary

Thank you Hilary.

I've spoken to the helpline and am using flat coca cola to help the nausea along with ondanestron. 

I'm just totally wiped out and cant imagine how I'm going to get through another 5 weeks of treatment!!!! 

I will DEFINITELY mention how ghastly I've felt at my next chemo on Tuesday xxxx

Hi Ron  

I'm on weekly chemo and had my first session Tuesday. I've taken the anti sickness as prescribed but still feeling dreadful.  

I'm just taken aback as to how awful I feel so soon. Really questioning how I'm gonna do another 5 weeks!!!!! 

I didn't get the sickness but I did get to the point that it was really difficult to get to the hospital (really tiring and every bump painful), as it turns out not all down to the chemo radio as I had CDif and spent the last week in hospital (the best week), I think you should do as was suggested and see if they will sort your meds as the radio is the worst part and it will get harder. I hope you have support as it will help. Do you have a PEG? if so use it, if you do then well done it's just there are posts with people saying they don't want them and don't want to use them but for me and many others they were a life saver.

Thanks Ron. 

I have got a peg and more than happy to use it when I need to. 

Just keep telling myself it's only another 5 weeks of treatment.  I just wasnt prepared for feeling like this. 

Thank you for replying

Be

Kelly x 

Hi Kelly. Sorry you’re so wiped out and the next 5 weeks of treatment  are looming and looking really challenging. You’re doing the right things - asking for help/advice and being honest about how difficult it is. Good to have some useful advice from helpline - but keep on asking and pressing your team for more/better anti-sickness meds.

The exhaustion is different - they can’t treat that. So I would advise you to be prepared for it to perhaps last the whole 6 weeks (although really really hoping it doesn’t). Prepare for the worst - assume you will be wiped out for 6-8 weeks and get help from wherever you can. Ask friends/family - anyone who has been asking if there is anything they do (and others who haven’t) - to help out. Please could someone  cook me a meal or to, take a load of washing to do, pick up some things from the shops, keep you company on one of your daily trips to hospital etcetc.  We can be terribly British and not ask (and some friends won’t have offered because they might think you want to be left alone) - but it will make a real difference to you to have less on your plate as the next weeks go by.

When I was facing 7 increasingly difficult weeks of treatment I asked my Mum and 2 sisters if they could help out at all - moral support I thought really. The closest was 2 hours away and one a plane journey from Scotland. But they came to support me at different times and it made a huge difference to me and to my husband who was trying to work full time and support me and my daughter. In the end they were much more than moral support - cooking, looking up sources of protein, doing household tasks so i could kip etcetc. So do get some solid support for the next few weeks. You may not need it and may soon be feeling less nauseous. But you know it will be tough so plan ahead. You’re obviously made of stern stuff and you will get through the next few weeks. So good luck and keep posting and asking any questions.

Hilary

Hi hilary  

Thanks for sharing your experience.  

I'm really lucky to have a great husband and mum (who lives with us) and they are doing everything for me and our 2x little ones. 

The physical aspects combined with the overwhelming guilt I feel at not being fit to do anything is really draining.  

I need to get over myself and accept all offers of help for what they are. 

I am definitely asking about my anti-sickness meds at my next chemo on Tuesday. 

Thank you again

Bw 

Kelly

Are you feeling sick today? if I remember it right my meds were finished today i.e. Sunday and my chemo was a Tuesday (does everyone have chemo on Tuesdays). I will have to look out the paper.

Hi Ron  

My meds finished yesterday - 5 day prescription with chemo day being day 1. 

Thanks