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My Dad now has NHL grade 4. Recent diagnosis. A daughters story x

Posted by
16 Mar 2016

Coming to terms with my Dad's recent diagnosis with non-Hodgkin lymphoma

Well hi - my first blog ever and I hope to write more in the coming weeks and months. It is so helpful to read others experiences and to feel the support from this amazing network of patients, carers and fundraisers!!!

My beloved dad, who is 73, has been diagnosed with NHL grade 4 lymphoma in his brain, a quite extensive growth. 

His symptoms started last year with facial pain and dizzy spells, and he was then diagnosed with trigeminal neuralgia, which we now know to be a side effect of the brain tumour, but at the time had no idea! 

After it worsened and dad's pain grew horrendous and was making him feel sick, he took more of the strong painkillers which left him with no appetite and consequently he grew weaker and ended up losing 2 stone (another symptom of a brain tumour but at the time we didnt realise just what else was going on behind the facial pain!) 

Two weeks ago he was basically shutting down - lethargic, couldn't walk as no balance, constant nausea and slept most of every day as much as he could. in his own words, he was "giving up on life". An assessment by the doctor got him admitted to the local hospital as an acute case, whereupon he was given a prebooked mri scan he was due and then we learned, mum him and i all together, the awful news. :-(( 

I couldn't take it in, so I can't imagine what dad was going through that night. However gradually after a week in hospital undergoing further tests and getting lots of amazing NHS care and rest, he is now feeling a bit more positive and has his appetite back thanks to the course of steroids which he has been started on. 

He is due to start his course of R-CHOP chemo as soon as he is strong enough, and if anyone has advice on how best to help the patient cope with the side effects/ keep them positive then please feel free to post any comments or advice! 

My whole family are going through some bleak moments and it runs through my head on a loop most of every day. However I am full of positive energy at the moment overall, and feel that where there is treatment there is always hope! 

I hope to write again soon. Thank you Bloodwise x 

I am going to enter the South Coast challenge Eastbourne - Arundel at the end of August. 

Wish me luck!!! :) 



Great post sis! Will be good for us to share and get support from the fab community at Bloodwise. :)


Thanks gibbo! Welcome to bloodwise! ;;-) onwards and upwards x 


Hi Eleanor!

So sorry to hear about your father's illness, it will be an incredibly worrying time for all of you. However, I have been through NHL myself, including six rounds of R-CHOP, and I have been in remission now for 3 years! Mine was a large mass in my chest cavity, Primary Mediastinal B Cell NHL, stage 2. The good news is that high grade lymphomas respond extremely well to chemo, and while chemo isn't a walk in the park, if you treat it with respect it's not too bad either. Rounds 2 and especially 3, I found hard; I developed sepsis after round 2 and spent a week in hospital. So be prepared for those sort of hiccups. Fresh pineapple contains an enzyme which helps prevent mouth ulcers, and my mother made huge pots of spinach and watercress soup, which I wolfed down, because chemo put me off my food. During the third week of each cycle, I tried to get in lots of walks, and see friends. NHL has a very good survival rate, and I focused on that, plus wanting to see my new granddaughter (my son and daughter-in-law discovered that they were expecting a much-longed-for second baby the month I discovered I had cancer!) Your Dad can do this, but remember to look after yourselves as well as your Dad, you are no use to him if you are burnt out! Hugs and prayers.. xo

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