Head is battling through this

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Hi I was diagnosed with follicular non Hodgkins stage 4(flipi 1) in December 2023.. a nice Xmas present . I am 44 and this is my 2nd type of cancer I have had.. back in 2016 I had stage 1a skin cancer and caught just in time( no chemo or radio needed) 

My journey so far is.. I had cycle 1 and it was hell.. I was prepared for the worst but I had a bad reaction to one of the drugs and was back in hospital this night.. i was ready to give up then.. as I thought I can’t cope with this every cycle… I did however turn a page and thought this has got to make me better so gotta run with it. 

I am due my next cycle next week and needless to say I am dreading it.. CryCry

I have good days… however I also have a bad day thrown in it and then days are awful.. I am getting there day by day and still working full time.. I do have lots of support around from family and friends but it’s so hard to explain how I feeling.. and the tiredness ooh my I have never felt so tired and my tummy is bloated too.. I did not realise all this would effect me..

so I getting there day by day.. and that’s all I can do at the minute.. 

  • Hi  and welcome to this corner of the community. I am Mike and I help out around our various Lymphoma groups.

    I don’t have Follicular Lymphoma (FL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable 'other' type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    Sorry hear that this is your second cancer and as you are experiencing, it's a rather different cancer to deal with but you will get there.

    I have been through a lot of treatment over the years as I relapsed many times (you can see my story through the link at the bottom) but what I found in the early days with my treatments that the body goes through a significant 'shock' when treatment starts........ but you may well find that your body will develop a way to deal with it as time goes on.

    What treatment are you on...... R-CHOP?

    Cancer-related fatigue may well build up over time so take each day as it comes but at the same time you need to try and keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

    Always around to chat and answer questions ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike for the lovely reply. My treatment is bendamustine with rixtuomab, and not looking forward to my next cycle at all..

    every day I get through it… mind no idea how I do though it’s a struggle I admit that.

    1. Before my cancer I was a gym fanatic did about 4 spinning classes a week and now by body is getting no exercise at all.. it’s so tired and the thought of even going out for a walk just tires me thinking about it. 
  • B&R is often used for stage 4 FL….. it’s strong stuff but it has to be like this as it needs to evict your cancer.

    My mind saw if the challenges I was experiencing during my various treatments was hard going…… what was it doing to the cancer.

    My main radiotherapy, chemo then two Stem Cell Transplants were between Sep 2013 and Oct 2015.

    When I was having my main chemo I was in hospital for 6 days/5 nights on my IV pumps 24/7 for my 6 cycles. The nurse team were great and in the early days a nurse would take me and my two chemo pumps and trolly for a 10min walk around the unit corridors after every meal….. it was hard work but I got into a rhythm and ended up doing it myself…… that simple comment made a big difference to my recovery.

    I was 58 when I was having my main chemo….. I am now 67 and do 5k on my exercise bike every morning….. take this as an encouragement…… life does return…. you just have to weather the storm….. remember the hard times are temporary ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Mike for the lovely reply.
    I keep on telling myself that it’s only temporary.. and u will hopefully regain back to my old normal life after all my cycles.. 

    I have 6 cycles of chemo.. then followed my 2 years of maintenance with injections every 2 months.. 

    Previously   before my cancer I was a organised social butterfly who would be planning events, do, get togethers.. and be the most organised person ever.. and be in control of everything.. whereas just now I feel my life is on hold and I can’t seem to plan anything as not sure how I will be feelingCry

  • ……. We (my wife and I) have kept notebooks for all the 23 years I have been on my journey.

    The note books were where we kept all the info we were given, questions we had to ask….. but the important pages were the back pages. This is where we noted down our post treatment plans, dreams, goals….. and when we look back we can see big tickets against many of the dreams.

    You need to ‘talk’ with more folks who are going though this so check out the Lymphoma Action website.

    Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Action Support Platforms for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

    They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Carolinemia 

    hopethis gives you some peace of mind. I also have stage 4 follicular. I’ve had the 8 chemotherapy sessions. I’m now in remission and hav ing the two year retuximab maintenance treatment. Towards the end of the chemo sessions I was very tired, very emotional and usually in bed by early afternoon. Lost my hair. I gave up on my gym sessions. But now I’m feeling lots stronger. Gradually getting back to fit….I go to the gym and swimming every other day.  I walk the dog and go out regularly. Don’t give up. Do what you can but don’t overdo it! Once you’re on the maintenance treatment you’ll start to regain strength 

    good luck x

  • Thanks for the lovely reply.. it’s nice to know that I not alone in this and what I am feeling and going through is normal. 
    I just find it so frustrating as I am not the kind of person to come from work and rest on the sofa. I am up and about and my hubby used to always call me a Duracell battery as got bounds of energy.. this is not the case now.

    I just have to ride this awful storm and keep on telling myself it’s only temporary. X