Treading water after finishing chemo; the anxieties as well as the highs!

Hi everyone! Hope you had a great Christmas and new year! .

It was so good to have finished chemo for Christmas and be feeling somewhat "Norma! " I do not see the consultant till February which felt fairly liberating at the time! However, not have the crutch of weekly bloods and hospital visits can also have the opposite effect as you are not sure of where or who to turn to in a "crisis" .

This week I started with a tickly throat .. 20 minutes later it felt like full blown flu.. I felt awful. My GP saw me and was reassuring but I felt very nervous and anxious.

Last night I had an almighty drenching ... Was it the cll or me being unwell?

Another issue is strange sensations where lymph nodes were/are so it's easy to become paranoid and then constantly examine... I had to literally force myself from touching my neck ... Am I an idiot? Probably but it's hard treading water without the lifebelt of the professionals. ... x

24 Replies

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  • Happy New Year Bethan and so glad 2017 sees the end of treatment for you. I think your anxieties are entirely normal though because CLL differs in that it still has the potential to keep giving and natural caution is totally understandable. Pre or post treatment we can never quite know how our bodies will react and once the very regular safety net is removed, it must feel quite scary. But in reality the safety net is still there because medical oversight doesn't end.

    Hope the 'flu' symptoms have subsided now. I'm struggling with an emerging cold and bad cough. My GP told me that 'upper respiratory tract infections' normally recover in about 5-7 days' so you won't need antibiotics which amused me a bit. The expression 'normally' being the operative word.

    Take care and I'm sure you'll soon be feeling more confident about your remission and able to stop prodding where the nodes were.

    Hope 2017 is a brilliant one for you! :-)

    Newdawn

  • Just reading your reassuring reply makes me feel better. Thank you so much x

  • Hi Bethan,

    Cannot add much to Newdawn’s excellent answer but I do remember feeling the same way after my FCR treatment. I was panicking over every little niggling ailment and thinking to my self has the FCR failed, was it all a waste of time? It was not of course but so many things flew around in my mind and I ended up making mountains out of mole hills. Like yourself I did have a sore throat, flu like symptoms and you think the worse because of what you have been through. Maybe it’s the relief from the mental stress of FCR that causes our bodies to go into a weakened state and lets these ailments get a hold?

    Take care and I hope you feel better soon.

    Kevin – Essex, UK

  • It's just so good to hear other people's responses. .Thank you! :)

  • i agree with Newdawn. You will settle into the new normal. Adults do not like change. You have felt a bit protected and reassured through treatment and you are now in the pool without the lifejacket and it is good but a bit scary. Based on your age have you thought of hot flashes I had them at you age?

  • I have but I went through an early menopause. ..without hot flushes... so was just a bit panicked last night. My husband said he had been hot all night too so taking reassurance in that !

  • I'm now 5 months post FCR and yes you are left jubilant and insecure. At my first watch and wait post treatment I was told to contact the Haematology Clinic if any B symptoms or unexplained illness. But you feel that you are not so important to them now. You feel dejected really because you are well. Crazy.

    Yes, you do live in fear that it's back. The odd lump, the hill that makes you breathless and the brain thinks CLL it's back! I'm hoping this anxiety goes at the 6 month check up next month.

    So you are normal we all seem to go through it but don't you feel better!

  • I so do feel better! It's nice to know that there are a whole bunch of crazies who understand!

  • Thank you so much. .I will definitely look. Ptsd post treatment makes complete sense.. what a trauma we've hone through..Whilst trying to put on a brave face!

    I agree with you about feeling less important to "them" . We become very hospitalised very quickly!

    Nic has been a fab support ...Although a bad influence! She has made me laugh till I was nearly sick whilst supporting in the darker days!

    Good luck with 6 month check. How often are you checked? Let us know how it goes x

  • Remember I got really nervous too about a month ago. Hope you're feeling a bit better B. xxx

  • Hi Bethan,

    I was very sorry to hear about your flu symptoms, but could really relate to what you’re saying…

    In December I had a cough/cold for a couple of weeks but then a week ago it suddenly got MUCH worse.

    Sudden fevers (temps spiking up to 38.2 then sinking very low). Felt shivery, nauseated, headache, brain bleary, very weak and wobbly. Called GP - he said probably viral but prescribed Amoxycillin because of my CLL.

    Over the next few days nothing changed (no better no worse), but then on Friday night I woke with a terrible drenching sweat. I’ve never ever experienced such a thing before. Even my legs were dripping. Head was throbbing, throat on fire…. Cough horrendous. Got up to wipe myself down, changed into dry pyjamas. Eventually got back to sleep…

    The morning after that night soak, it felt like something had lifted a bit. I felt a bit better – thought I’d turned a corner. But then last night I was hit by another drenching sweat episode. Had fever (38.1) and felt very bad again this evening. Quite frightening and like you, I’m thinking is this a CLL thing, or part of the flu/viral illness?

    I was due to go back to clinic tomorrow for my 3 monthly appointment, but know I must ring to postpone. It wouldn’t be fair to take my bugs into a crowded leukaemia clinic. But I’d been looking forward to getting the CLL experts’ views on what is happening.

    There are some horrible bugs going round these days. I’m hearing of many people (not CLL folk) who are getting particularly nasty flu-type viruses, that hit hard and don’t go away in a hurry. So I’m inclined to think my problem is that, rather than CLL as such. But it’s been a very difficult week for me.

    Sounds like it’s been very hard for you too. I can well understand the feeling of being in the water without the lifejacket you had earlier. I’m feeling a bit the same, after the very intensive care I got while on a clinical trial last year, stopped after my spleen ruptured and I came off the trial. My health’s been good since then, but I have missed the medical backup from easily accessible experts.

    I’m not sure if all this has been any help to you. But it might be helpful to know that someone else is experiencing something similar… even though she hasn’t found any great answers…

    Wishing all the best for both of us as we go through all this.

    Paula

  • Thanks Paula. It sounds like you have had a rough time... poor you. It dies make you value your health.

    Thanks for the encouragement and advice .. temp has been good but I agree that plenty of fluids healthy food will help get me back to a better place!

  • Hi Paula. The symptoms you have described are exactly the same as I experienced twice last year. Like you, I thought/wondered/worried whether or not it was a 'virus' or my CLL returning. The last occasion took approx 8 weeks to clear and was so dispiriting. When I had my hospital appointment I told the doctor who said that if I had not so obliviously recovered, she would have arranged for a scan to see what was going on. 'Touch wood' all is OK now apart from what I call my 'virus lite' this is where I have general sinus/cold problems but feel OK.

  • Thanks for sharing, bantamsheffield . Interesting that you experienced similar symptoms as me. Great to know you recovered so didn't need a scan, but 8 weeks is a long time for a virus to linger. I can understand how you worried if it was CLL returning.

    It's the drenching sweats that particularly concerned me. I've never had them before even when my CLL was at it's most active, so it was rather a horrible shock! However, my sister has just told me that a friend of hers (who doesn't have CLL) suddenly went down with a nasty "flu" bug last weekend, with similar symptoms including the night sweats. So it seems that there are some particularly nasty bugs around in Sheffield (and probably further afield as well) that add drenching night sweats to their game. :-(

    Hope you manage to avoid this winter's bugs, and the general sinus/cold problems stay under control..

    best wishes,

    Paula

  • Hi Bethan,

    Sounds like a really nasty flu virus has you in its grip. I think it might be a good idea to head back to your GP just to make sure your lungs are clear, as a bacterial infection can take up residence very quickly, especially since you have just finished chemo. Might be a good idea to monitor your temperature to see if you have a fever. Your lymph nodes in your neck might be tender and a bit swollen, but I think it is normal when fighting off an illness.

    Also, do look after yourself very well, by drinking lots of fluids and having nourishing soups, and lots of rest.

    Hope you get better very soon,

    Sandy Beaches

  • Hi,

    It is scary when treatment has finished and you feel left alone.

    I did FCR in 2013 - my last round was in the August. I did brilliantly well and achieved MRD neg. I am always an upbeat person and look on the Brightside so it was a huge shock to me that from the New Year,2014 and through the month of January 2014 I felt dreadful - very low and weepy. Never been like it before!

    It lasted about a month and I put it down to the stress of FCR and how your life revolves round hospital app's and suddenly that's it. It was hard after so long watching blood counts rise and worrying about treatment that my worry than began of how long will this remission last. I had a friend who went through breast cancer treatment at the same time and she was really looking forward to the date in 5 years time to get an all clear and I was thinking that in 5 years I would probably be looking at another treatment.

    Feeling that you've been through all that chemo and it's not cured I found hard to accept, but in the end you realise that if you're not careful you miss out on all the positive things remission brings - feeling well, enjoying family life, no more swollen neck.

    My consultant is expecting me to have 4/5 years remission - as I'm unmutated - and this year is 4 years - so whatever happens will happen I cannot change it, I just try not to let it be at the front of my mind - which is easier said than done sometimes when it comes round to hospital check up time!.

    I hope you soon get rid of any cold bug that you have picked up and go on to enjoy a long and healthy remission :)

    Louise :)

  • Aw Louise, you've hit the nail on the head. I think our lives become really small but intense when we're having trearment and then it's all over...BUT rather than a silver lining, a little black cloud following us till next treatment.

    I too small positive but I do feel knocked at the moment. . Wondering how long remission will be etc.

    I too am unmutated ... I've always been confused ...is this a positive or a negative?

  • Unmutated IGHV gene corresponds statistically to a shorter time to treatment and shorter remission times - on old chemoimmunotherapy treatments like FCR and BR. There's considerable overlap in these times in the two groups so this is only a guide for an individual...

  • Thanks neil...Really helpful as clear and yo the point!

  • I see Neil has replied to this - but yes unfortunately unmutated is a negative.

    Got my 4 month hospital check up next week - so must admit I'm feeling for any lumps and bumps - but hopefully nothing will have changed :)

  • Hi Bethan

    I think it will take a little time for things to settle down foryou. Well done for getting yourself checked by doctor. Once you've had your consult in February you'll feel a lot happier and have more knowledge from him.

    Hope your remission is long And all good wishes.

    Sue

  • Thanks Sue. Feeling a lot better today . Just got to live now!

  • Your fears are entirely natural I would think Bethan and much good advice already given.

    I do hope you'll be feeling better soon.

    Peggy

  • When I was younger I had a few really severe flus - long before CLL. I remember the fever going up and then "breaking", sometimes with the help of a fever reducer - sometimes multiple cycles over several days.. When the fevers broke I would get drenching sweats . It's hard to know whether you are dealing with that cycle or something else, but I would keep your doctor posted. I hope you feel better soon!

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