Terminal NHL

Hi Kerry71 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 I do appreciate the challenges of this journey rather well.

So sorry to hear how things have developed with your mum..... this is such a hard time for all the family.

How old is your mum?

CNS lymphoma is not that unusual and tends to be treatable...... but the treatments used are very very strong........ Has your mum other health conditions that is limiting her being able to go through more treatments?

I am not aware of anyone in the group at the moment in the same position both as a patient of a family member

Always around to chat ((hugs))

My mam is 73, the doctors told she has weeks, maybe a couple of short months

Really sorry to hear this...... if the Consultants are saying this..... then unfortunately you have to start preparing for what these months will bring.

Can I recommend you join and post in our general Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the same challenges while supporting family during their final months.

The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about practical information, get emotional support, benefits/financial guidance or just connect with a listening ear. 

We also have our Ask an Expert section but do allow a few working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.

Please do get back to me if you need further help ((hugs))

So sorry to hear this. Central Nervous system Lymphoma is indeed treatable, but remains a challenge, even if found only in the spinal column, for example. The treatment can be grueling, even in the young and healthy.

I will have to guess here, but it seems likely that in order to treat your mum effectively, her life would be much more in immediate danger from the treatment. Probably more so than from the lymphoma, which is generally a gradual process.

The lesson I received with my parents was to enjoy each and every moment with them - considering even that we might go before they do. Love is the greatest force on this earth, and it is both tested and proved in such times.

Being a prayerful type, I will pray for you, your mother and all of her loved ones.