Hi everyone, I’m new here but really needed help and advice.
My mum was diagnosed with both high and low grade non-Hodgkin lymphoma in august of last year. She’s had 6 cycles of RCHOP already and everything seemed to be going well. However, she’s had a check up and scan and it’s showed that the chemo hasn’t worked, and the cancer has now spread from her chest and diaphragm and is now in her neck and abdomen. It’s a major blow to the stomach, and I know this sort of thing can happen, but it’s really made my mental health do a nose dive. I’m not sure how to feel or to act and I just feel like I’m living inside my head, with all these negative thoughts and feelings. My mums still as strong as ever and just wants to face this head on. They’ve said she’ll be having 6 more cycles of a more aggressive chemo, and she’ll be really ill with it. I just want advice or help on how to deal with all of this. I’m trying to be strong and optimistic about all of this for my mum, but I’m really struggling with all these set backs. My mental health isn’t great anyway and this whole situation has made it so much worse, but these setbacks are just making it more difficult everyday. I get this is normal to feel, and set backs happen and cancer is just one big rollercoaster, but how do I stop living in my head and how do I not let these negative thoughts get the better of me.
Hi Gothgirl98 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare (Incurable) but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your mum's I do appreciate the challenges of this journey rather well.
I relapsed multiple times over my first 15 years but I am now over 7.5 years out from my last treatment, turned 67 last November and doing great..... I say this as an encouragement as even in the most challenging cases a way forward can be found.
The battle between the ears is one the hardest to control but if you are trying to control this single handed you will find it hard to make progress.
My long suffering wife had a group of trusted people who she could do a brain dump with...... she found 'talking' helped. She also used the services of Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
They run regular Support Platforms with a few groups specifically for Family and Carers...... 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 helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
We both found our local Maggie's Centre to be a great help as their support was amazing.
Always around to chat ((hugs))
This all takes time and some commitment to clear the head space and allow some space to live some normality.
My wife’s group of ‘people’ had no family in it as that was too close to home.
The community is indeed a good place to get stuff out and as it’s completely anonymous it’s a safe none judgmental place to do this.
If you have looked at my story we navigated some very difficult times…. I stay incurable with my condition asleep at the moment so our hope is it stays that way.
Do check out some of the ‘talking’ opportunities as this will help a lot. I know the Lymphoma Action support line team well and you won’t go wrong making contact ((hugs))
