Just had staging scan after cycle 3 of FCR

I was a little disappointed to be told yesterday, following a staging scan, that I would benefit from having the planned 6 FCR cycles event though my enlarged lymph nodes are more than 60% gone after 3 cycles. However, I do understand that this will hopefully put me into a longer remission. My husband has been my rock throughout this whole ordeal, but he shocked and upset me today when he told me that I seem to have it on my mind 24 hours a day, & that I am speaking about it far too much. I told him in no uncertain terms that yes, it is definitely on my mind 24 hours a day, and if I can't speak to him, who can I speak to. I now feel as though I have to think before I speak - and I'll definitely be trying not to talk to him about it. Am I being unfair to want to be able to speak my mind to the person I'm closest to ? And how can I stop myself thinking about it all the time ?

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  • I have been told something similar...'you are letting it take over your life'. Net result is my wife does not really know what is going on since I now say little; her choice really. I also hope it is not taking over my life. I walk a lot (2 hours), I work a bit, cook, eat chat, get the car serviced and that was today.

    Set against this the role of the carer is a tough one. I know when my wife had a broken ankle we certainly heard a lot about it; I just let a lot of that wash over me and picked up on the bits where I could do something.

  • Start planning together. Days out at first then weekends away. Don't let your treatment stop you dreaming. Life will soon be normal for you and those closest to you. It is harder for those who do not have the disease. They care but can find it overwhelming. I was lucky friends and family just listened when I wanted to talk but that wasn't 24/7.

  • We need to talk. Anything can be a bit consuming. Years ago when a friend had cancer he asked if he could call me to talk. He told me all the gory details and I listened and contributed as needed and as was natural. I think it provided relief for his wife and as my husband would have found it hard to be the support person he was happy to let me be the one. Maybe u could ask a friend, colleague, relative to be that listener for u. My friend died within 10 months and I was glad to have been there for him at least once a week and his wife was also most appreciative. Just a thought.

  • It's hard isn't it. When I was first diagnosed and told only a few of my closest friends and family, it really surprised me how differently people reacted. Some of the people who I expected would be there for me with my fear and (sometimes irrational) anxieties didn't understand whilst others, not expected,gave never ending support.

    Your husband is probably having trouble coming to terms with it himself and doesn't quite know what to do. Not easy for you.

    Peggy

  • I am sorry so caught up in myself and self pity I neglected to try my answer to your questions. (and I am perfectly well at the moment)

    First I have no idea what it is like being on Chemo. seems to take some people harder than others and am I wrong in saying it can affect your emotions?

    Having someone else to talk to- I talk to my brothers, in fact we 'meet' in the virtual world every morning. Do you have other friends in whom you could confide, who might step in and be that extra support? Maybe we need more than one rock.

    Sharing on here is an excellent idea and you have already done that.

    Are you being 'unfair'? I am not sure 'unfair' is a useful word here. I would say you are leaning more on your partner than he is able to bear- maybe you are hearing his distress. I do better when looking after my wife if she has a specific request that I can meet.

    How can you stop thinking about it all the time?

    I am not sure if you have good days and bad days, or whether things like your neck pain are always with you. In order to distract myself I would do something that is different- anything the bigger and more exciting the better. What is it you really like doing? What is it you like doing together? My wife and I both sing and so we go singing together. If you are not able to do anything then make plans for the time when you can- together if possible

    Obviously CLL is a physical disease. Well there is little we can do about that other than make sure we find the right person to deal with it. I am increasingly struck by the emotional and psychological impact about which we can do plenty; that will in fact make the physical side better (stress is an aggravating factor). CLLSA are thinking about local support groups at the moment and that seems a most excellent idea. I am fairly sure there will be other stuff out there on the WWW which looks at ways of support, I will go look.

    Love and Hugs

    Les

  • Hi Grannajan

    Tough one this but I want to do my best to be a help so here goes. I have been both a carer and a patient and hope I can give you some perspective. Being a carer and watching a partner you love suffer through treatment is tough, really very tough as you can do nothing positive to help but be there, be a sympathetic ear. Though scared and unsure and fearing you might let your partner down, you have to be positive, encouraging, a strong shoulder to lean on and keep it up day after day after day.

    It is exhausting and unrelenting and you hover close to breaking point. Which is where your husband is right now. As patients we are inclined to unload all our fears and anxieties, side effects, emotions etc etc on the one closest to us. As a patient we have to recognise we are not alone with our problems but recognise your partner is suffering too. It is easy to let treatment take over your life , and you have my sympathy that you are suffering this, but you will come through it . It will be good if you come out the other side with an even stronger relationship.

    Time to sit down and work this out together, talk about how your illness and subsequent treatment has impacted on your relationship, and how sorry you are that both of you are affected. Plan for your future post treatment, where you will go, the things you will do together, most importantly remember how it was when you got together, give comfort and understanding and I'm pretty sure from your post that you will have it reciprocated.

    Try writing all your fears down in a private little book, and we are here if you need to vent.

    Wishing you strength and future happiness and health.

    Bubnjay1

  • I finished FCR for SLL in the summer. Through treatment my husband was great. However it is only since treatment has finished that I have found out how hard it was for him. To see me at my lowest points whilst unable to do anything to help, and worrying how the treatment would work. Also taking on the full responsibility for everything else at those times, household, family, work. It was only yesterday that I looked at him and said that he had lost that grey tinge.

    I don't know where you live, there is the Macmillan help line and Maggies centres in the U.K. Maybe others from other places can help out with what support is available elsewhere. Talking to people outside of the situation helped me, it meant that my husband wasn't getting all the worries and negative thoughts that swirled round my head. Instead I would be able to tell him how the conversational gone, how it had helped to calm me down till the next time.

    You will get there!

  • Thank you everyone for your comments, advice and support. I do have lots of other support from friends & family. This week I have an appointment with a counsellor too, as I feel that she will be completely detached from me, so I can say anything that comes in to my head. I have SLL too MF79, and I live in Essex in the UK. I have to say that I know my problems are mainly psychological as so far I have been very lucky, with no symptoms pre treatment other than swollen lymph nodes, and I seem to be tolerating the chemo very well, with only a few side effects. I really do count my blessings, but needed to have a bit of a rant !!!

  • This is Rant Central! ;-)

  • Ranting works for me! Glad your treatment is going well. I was amazed about how quickly the glands came down and how nice it was to see I had a neck under all that swelling.

  • Go on having your further three cycles and you will get a CR and, possibly MRD negative. Then, slowly but stady you will forget the odeal. Other things will again occupy your mind! 😉

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