I’ve just been given the news that after 4 treatments of rituximab my main tumour has shrunk from 3.6cm to 2.1cm, some lymph nodes have shrunk to below 1cm, therefore they do not consider them to be a problem and that I have 30% improvement, so they class me as in partial remission. My family are so pleased about this whilst I am still struggling with the fact it wasn’t a complete remission. I feel more sad than before but don’t know why! I know I should feel grateful but my mind is very confused. No more treatments scheduled. I wrote this 4 weeks ago, and I’m feeling brighter. Any contact would be welcome!
Hi @Kimmie17 I hope you are doing okay? Thank you so much for taking the time to write this message and for being so open about how you feel. It’s so understandable to be feeling like this. As you say, often a situation like this can bring more questions than answers. But @Kimmie17, everyone is different, and there is no right or wrong way to feel. I’m so pleased that you felt comfortable enough to share what’s on your mind with this forum, and hope you know this is a safe space where you can talk to others who are likely to be going through something similar. How have things been for you @Kimmie17 during this time?
It’s good to hear you are feeling a little brighter. I often think that this is the most difficult time - after treatment - and lots have people have said this. I have follicular lymphoma which is active in my abdomen but hasn’t increased in two years - yes this is great news. On the other hand, no, it’s not because it’s still there! That can be a huge mental challenge. As you have found, time does help, sharing helps and just taking each day as it comes. Like Su said there is no right or wrong - it’s a personal journey. Family and friends just want to see the positive don’t they as all families would. This can sometimes add pressure. Keep sharing, keep talking and just give yourself time. We are all here for you! How are you today? X
Hi @Kimmie17, @Nichola75 and @SuBloodcancerUK, thanks so much for your honest post about your feelings. Personally I think your feelings are completely natural and I have had them too in a different medical situation. I think family and friends have a great need to make themselves and you feel better. It is not right or wrong, but in my experience just how it is and it is something I try not to do myself and just be there for someone to share how it is to be them. The two things that has helped me as the patient are is to accept others as they are and to ask every question of my medical team that is worrying me or playing on my mind. I also think my sadness has been partly that others will now expect me to go back to my ‘old’ normal, and not the ‘new’ normal. I think this is also more difficult when we have an invisible illness, although I have a very vivid visual image of what is inside me in my mind. We are going through an emotional process and I think be kind to yourself and as you say you wrote this 4 weeks ago and today you are feeling brighter. For me some days I feel better than others, and perhaps that makes me appreciate the better days more and accept and understand why I do not feel as good on other days.
I totally get the ‘new normal’ I’m working hard to achieve that, I actually wrote that 1st piece 6 weeks ago, I just didnt post it, and I’m feeling stronger with just a few dark days. Thank you for replying, it helps very much!
I hope you are feeling well.
I’m feeling ok today thanks, had a wobbly night last night, but appreciate even with FL I’m better off than some cancer sufferers. Thanks for the reply, greatly appreciated.
I think I can be open on here as I’m keeping strong with friends and family who now seem to think everything is ok . I genuinely appreciate any support, advice, replies and thank you for doing so. Im coping with lockdown as I am working from home and taking daily exercise in a nearby field…just me my dogs and nature!
@Kimmie17 It’s only natural to have some days which are less positive than others, as our other lovely members have said, though it can be easier said than done- do try to be kinder to yourself @Kimmie17 it must have taken so much courage to write this. I can only imagine how tough it can be also if you get the sense that friends and family feel everything is ok. It’s really good to hear you are able to work from home, how supportive have you found your workplace to be?
My workplace so far have been really good! Thank you
I am so glad your workplace have been supportive, it makes such a difference doesn’t it, take care.
It’s really good to hear that you feel able to be open on here, it’s such a friendly and supportive community isn’t it. It’s also good to hear that you’re feeling better than you were a few weeks ago and that you’re able to work from home and take daily exercise. Just having a bit of a routine make it easier doesn’t it! Keep posting @Kimmie17 and have a good week