Feel alone

Hi Jules3rdDan and welcome to this corner of the Community, I am Mike Thehighlander and I help out around our NHL groups.

The NHL journey can be hard to navigate in some many ways, you need support, your family need support but everyone just tries to do their best but often we just find it hard to deal with and often as not we get things not just right....... then stress and worry creeps in.

I was diagnosed way back in 1999 with a rare Cutaneous T-Cell Non Hodgkin’s Lymphoma (Skin Lymphoma) and as a family we adopted an ‘open’ policy with open conversation and clear updates,

Everyone in the family could have a good day or a bad day so everyone supported or gave each other space..... but we also connected in to outside support networks like our local Maggie’s Centre as this was essential because of the crazy journey we went on (Hit my community name to see my story) as my journey has been very been long, very complicated, at times very traumatic so there is as no way anything could be hidden from any of the family,  

What treatments have you had....... if any?

Lets keep the conversation going as there are folks in the Community that can help out.

((hugs))

Dear Jules, I identify totally with your feelings. I have a husband who struggles emotionally and who is 80 yrs old! I have 4 sons who all are busy and do not know how to respond. I was diagnosed with Ca breast cancer in January this year and I have so many family issues to deal with, esp one of my sons who has mental health issues. I feel I should be protected and yet I am not as I am doing the protecting. Every so often I shout at my husband and tell him how vulnerable I feel. I am on a horrible drug, Letrazole and it makes me feel sick. I can’t sleep well at all which is my main issue. You are not alone. Please keep in touch. Jane

Hi Jules are you on watch and wait by any chance? just you don't mention having had treatment either way a diagnosis is hard on families as all too often people tip toe around each other and sometimes you just need to share how you feel with what's going on but its never easy.  

Sometimes I found an honest conversation helped explaining that at times you needed to share certain things and whilst that may seem selfish it was necessary and made sure we were all on the same page and when that was not possible we knew why. Part of the deal was respecting at times partners and family may not be ready or willing to chat and that meant coaxing them along to be as comfortable as they could be, given the circumstances. 

What is important though is that you are able to give yourself the opportunity to do what's best for you and as Mike has said Maggie's are a great place if you have one near by, hospices can also help as some have a wide remit and a wealth of experience.

You can ring the Mac helpline or the is a smaller lymphoma specific charity called lymphoma action, they have a helpline and lots of resources and options to https://lymphoma-action.org.uk

John

Thanks for your reply, Mike. The kids have been supportive in various ways but I have found out that privately and naturally, they are struggling with mum being sick. I have had 8 lots of retuximab and have been in remission but have now discovered I’m 1mm away from relapse. Whilst we have agreed that honesty is best I’m still reluctant to divulge until necessary which just puts pressure onto me which like last night, I was feeling a tad overwhelmed. No one said it’d be easy...

Hi Rosemaryjane, thanks for your comments and honesty. Please see my comments to Mike but to add, I also don’t sleep too good from pain not only related to MCL but to pancreatitis too and whilst it seems strange to say, it’s a bit of comfort to know I’m not the only one laying here staring at the ceiling

HeyJohn, thanks for your comments. I’ve looked at a lot of info on the lymphoma action  website and haven’t noted the helpline; food for thought. It’s a fine line we tread, isn’t it, how much and what to share. Only sometimes the shut up and put up puts a lot of strain on us eh?