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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?
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.
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”
“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
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!
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.
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.
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.
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