Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

How to break the bad news?

Shorty68
Posted by

Hi everyone, 

I've recently been diagnosed with lymphoblastic cytic lymphoma (LCL) . I think that's how to spell it ! I've got my head round it so far but I'm tired of ruining  everyone's day. Obviously I want friends and family to know but breaking the bad news over and over to different people is hard. My husband is having a hard time and I don't particularly want him to have to keep explaining. I've asked other people to pass the news on as well but has anyone got any tips or advice about spreading the word?

Cheers

Barb x

johnr
Posted by

Hi sorry to see you joining us, a diagnosis is always hard to share and the guilt we often feel when you see the shock on peoples faces and they often don't know what to say, so the onus is on the patient to break the silence, that's all hard but normal. I never found an easy way other than after a while I stopped telling people and only shared what I chose as it does become obvious if treatment is needed and hair loss is a side effect of the regime given. 

You could do a facebook post explaining what it is and if its not been said how blood cancers are not like solid tumour cancers and not a death sentence, which is what jumps into most peoples minds.

sorry this is not much help hopefully someone may have found an easier way.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Thehighlander
Posted by

Good morning Barb and a second welcome to this corner of Online Community, although I am sorry to see you finding us, but I see you have had some great support from John.

A cancer diagnosis can bring a lot of confusion and questions to a family but you have found us and let’s hope we can help you on this journey in some way.

Some background - back in 1999 when I was first diagnosed with my rare type of skin Lymphoma my consultant said that you can live for a long time with this condition, yes you we need ongoing treatments but think of it as a chronic health issue. But he also added that at some point in time the condition could become aggressive and be life threatening. You can see my profile for the full story.

As for telling family and friends for me it was straight forward as I had horrible Psoriasis looking marks on my face and all over my body, so I could not hide it.

I was totally open with family and friends saying I had Cancer, conversations often went

“I have been diagnosed with cancer”

“Skin cancer?”

“No a blood cancer”

“What is blood cancer?” (most people just do not understand what a blood cancer is)

I would then explain that “ A blood cancer is a chronic blood disease that will need to be treated from time to time but I DO intend to be around for many years to come”..............”Let's have a coffee”

As John says the word cancer immediately bring the ‘Death Sentence’ thoughts  into peoples minds and you just have to defuse these thoughts as this is far from the truth.

Keep posting as we are around to walk this with you.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Shorty68
Posted by

Thanks guys,

It actually helps a lot to know there's no real easy way to do it. I think as soon as everyone does know and I carry on without hopefully too much difference to everyday life people's concerns will settle down.

Just going to keep my head down till my next appointment and enjoy the rest of my summer. Thanks again for your quick replies. You do make a difference to us newbies. Keep up the good work! 

Barb x

Thehighlander
Posted by

Hi again Barb, if only ‘one size fits all’ in this situation but you have to go with your gut feelings.

Once you have all the tests done and your team are presenting you a plan the noise in your head will calm down.

Make sure you are prepared for appointment with a notebook full of your questions and remember and keep notes of what is being said and proposed - my ones go back 20 years.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’ section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

But one thing you can be sure is that we are around most of the time to help you navigate this road.

((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Joncol
Posted by

Hi Barb

i didn’t tell family and friends until I knew exactly what the plan was but had a difficult few weeks trying to appear my normal self when my head was all over the place! My adult sons were very cross with me for not keeping them informed from the beginning but as I said to them I had nothing to tell them until all the test results were in. After a while it all calms down especially if you are on watch and wait and I think everyone forgets that you have cancer.

Jane
Ducthie
Posted by

I told people i wanted to face to face whenever i saw them. I had to call my family because they are abroad. That was the hardest. The rest i popped in a whatsapp group, or asked people to tell the others from particulair friends groups. 

Diagnosed in may 2018 with Primary Mastetic Large B-Cell Non hodgkins Lymphoma. Cancer free since November 2018.