Hey everyone,
I’m going to start this with I guess a trigger warning, for lack of a better term. This will contain a lot of negativity and anger.
I noticed my neck lump when my 2nd child was 2m old, and I was in the middle of being a mum again, baby stuff, little sensory classes, breastfeeding….just all the nice things that a baby brings. An illogical part of my brain thought…it can’t be anything serious - I’m a mum with a 3 yo and new baby. That would be too awful to even think about, so it can’t happen.
fast forward to now and I’m 3 R-CHOPs deep, unable to physically be there for my children the way I want to be, bald and wretched-looking, uncomfortable with side-effects and exhaustion and, generally, feel that everything I loved and held dear has been ripped away.
Up until last week I think I was holding it together by seeing cancer as having nothing to do with me, it was just something that fell into my life and I was going to punt back out and we’d never have to think about it again. I could maybe salvage some of my daughter’s babyhood and be back to my 3yo’s reliable, happy, present mum. But I’ve suddenly realised that my lump’s still there, has possibly gotten bigger, and that it’s a real possibility that my life as I knew it is over, and my kids have been cheated out of a normal childhood, and my husband out of a capable, loving partner. This makes me feel extremely angry, to the point where I think if RCHOP fails, I want nothing to do with the next steps. It wouldn’t give me or my family anything back, would cause so much heartache and stress, and likely wouldn’t work anyway. I’d rather die while my kids can’t really remember it.
I‘m posting here I suppose in the hope that someone’s been here before me, and can tell me it lifts. As it is rn, I don’t want to walk into a Maggies centre because the thought of it makes me want to scream. I shouldn’t have to spend time doing extracurricular cancer activities, and making it part of my personality. I hate cancer, and everything to do with it, and I know that would come across to the undoubtedly kind people there. They don’t need someone like me around. But I read all the matter-of-fact, reasonable, resilient posts on here and think….how? How on earth can anyone be ok with any of this?
Hi Cardamom_bunand a warm welcome to this corner of the Community but sorry to hear that you find yourself on the Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups. I don’t have DLBCL but I have been on my Lymphoma journey for coming up to 26 years….. first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL).
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well having had 750+ hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015.
It would not be logical to be ‘ok’ with your diagnosis and everything that the journey involves…
In some way I appreciate your frustration around not having quality time as your children grow up….. our second granddaughter was born just after my first Allogenic Stem Cell Transplant and I was not allowed to hold her or be in the same room as her for 5 month due to my very fragile immune system….. the same happened when our third granddaughter was born but the ban was only 3 months…
As for your lump still being there…. unfortunately normal and changing shape or growing again normal….. it’s all part of the treatment process.
Based on my long experience where I have relapsed multiply times over my first 15 years there has always been next step…. have I accepted the hand I have been given……. eventually yes I did……. as the other options would have consumed me……. and robbed me of the normal life I live now seeing my now 4 granddaughters growing up.
I don’t have words that will magically change this but only my story …….. but I am over 10 years out from my last treatment, I turned 70 last Nov and living as good a life as any healthy 70 year old can be living..
Always around to chat.
