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I have FNHL and am on my first cycle of chemo and antibodies and then 2 lots of antibodies (1 more lot to go)

.  I am going day by day as I never know what tomorrow will bring but I am struggling so much at times.  I seem to have pretty permanent nausea which I can cope with and am so emotional, bursting into tears at the least little thing.  My husband is absolutely amazing and always there for me when I need a cuddle, even in the middle of the night!  I know I am so blessed and I'm not complaining, things could be a lot worse.  I am having a lot of trouble sleeping.  I can't drop off and then just seem to doze rather than sleep and as you can imagine it's making me so tired to add to the overwhelming fatigue as well.  Any advice will be most welcome.  I am having complimentary therapies and tried counselling but it's not really my thing.  Yesterday necessitated a trip to A&E as my temperature shot up to 38.2 and I had to have an IV antibiotic drip.  I have to praise the NHS.  I waited outside for 5 mins, was triaged and then taken straight into a cubicle.  3 hours later I was on my way home.  NHL has it's benefits, it's like a golden ticket but I don't want to have to show it again in a hurry!!!

  • The treatment journey is a set of adventures most of which you would not choose to go on but needs must…… months down the road you are going to be looking back through fuzzy memories.

    Suffering nausea but not being sick was the same as me….. I only was eventually sick 2 times over the 2 years treatments, the first was due to a very bad choice of food Rolling eyes….. the other was after my very last half hour chemo IV.

    Sleep can be a mystery so you sleep when you can but if you are sleeping a lot during the day my SCN told me and my wife to set an alarm for 45mins each time so I did not sleep so long during the day that I could not during the night…… I did have some sleeping pills I could use a few times a week if things got bad but once treatment stops this tends to clear up and you get back into a rhythm.

    You and your husband are doing just great.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you for your wise words.  I try my best not to doze during the day but sometimes I just have to give in.  It's a bit of an adventure as each day seems to bring something else that I've not had before e.g. a pulsating pain in my lower middle back which came and went,  Yesterday was the IV antibiotics but so far today, apart from horrible nausea, all is good.  I went out this am, am going out again soon and some friends are coming for tea and biccys later.  LIfe is good just sometimes it throws a spanner but I am strong and determined and I will get through all this.  I am keeping a diary which is helpful and I'm sure one day I'll look back on it and think what was all that about?!!!  Keep up your good work.  You are an inspiration.

    1. Aww Chicken soup Queen, I’m so sorry to hear all your symptoms, also sorry I’m no help as it’s my husband who has FNHL, he’s just done 12 radiotherapy sessions which seems a lot more easier than what you’re going through, we haven’t got his results yet though. I’m just sending you hugs and to say you sound a very determined person, you’ve got this xx
    Sue Xx
  • Hi Sue.  What a lovely message.  I hope your husband gets good news after his radiotherapy, please let me know. Sending you lots of hugs too xxx