Log in
CLL Support Association
12,858 members19,841 posts

Patient stories from Leaukaemia Care

I was asked to record a film about my diagnosis and Leukaemia Care came up with this video - I know that other charities are available, but these guys really helped me out on day one.

13 Replies
oldestnewest

Great video , echo's my experience , first people I phoned were leukaemia care and they were reassuring and supportive while giving me good advice( I too cried while talking to them) your video made me cry just bringing all those emotions back, they are now one of the charities I support with donations, 👍🏻👍🏻👍🏻

3 likes
Reply

Thank you so much for posting this. 9876 was right it also echoed my experience. I have had counselling through Macmillan. It really helped me to process and live with CLL and the enormity of a cancer diagnosis.

Although family and friends have been supportive throughout the years, I look heathy and I'm active. I think it's hard for them to mentally associate me with cancer. My sister even said that it's not a 'real' cancer. Little do they know what's going on in my head. The day to day stress and fears that creep back in. Learning to live with those and keep them under control. Let alone living with CLL.

Thank you for making the video and for being visible.

Madlark

5 likes
Reply

Thank you Mike

I think your video will be of great comfort to the newly diagnosed, they will see that they are not alone, that there is help out there. That it's ok to weep.

Best wishes

Bubnjay1

2 likes
Reply

Hi Mike,

An honest and open video that so many of us will identify with so thank you for sharing that immensely personal and painful time with us.

It made me go back and check the very first messages I sent after being diagnosed just over 3 years ago. I really hadn't a clue who to contact and I didn't want to disclose this widely to family and friends for very personal reasons. I needed to talk to somebody who understood, who really got what this funny old CLL was about. The hospital hadn't given me anything except questions and no one to direct them to.

I've just realised that the first three people I spoke to the day after diagnosis are people who I've remained close to and speak to regularly. I've never met any of them and yet view them as valued friends as I do others I've met along this reluctant journey. That has been the valued plus side of a very negative experience.

I really hope that things have changed at diagnosis for people because it's a lonely and terrifying time when even the strongest become weak and I'd like to see everybody being issued with a pack containing numbers and contacts to reach out to. I ended up scouring the Internet finding scary data as I went but was grateful to stumble along the wonderful Maggies and the group there. We all remember that time vividly and we remember the people who caught us at our most vulnerable time.

The words we hear at that time and the support we feel is incalculable in its worth.

Thank you for doing the video Mike and hope you're doing well.

Newdawn

7 likes
Reply

Agree with all the above comments. CLL is a very lonely road, the support from fellow sufferers is invaluable. Peggy.

3 likes
Reply

Thanks so much for sharing this, Mike.

I was just diagnosed last week, but had worried for 6 weeks prior to the diagnosis. I'm in the States, so can't call Leukaemia Care, but plan to look into groups here that can provide support. It makes all the difference in the world to have someone who really understands, and has been there.

All the best to you!

2 likes
Reply

Excellent piece. Thank you for this. I was diagnosed in May 2014 and felt as you did but probably could not express it - even now - half as well in 3 or so minutes. It will no doubt help many others.

2 likes
Reply

Thanks for sharing your story.

It will be a great help to many.

Stay well-

1 like
Reply

You videos are just wonderf...took me back to my moment of dx three plus years ago... Thank you so much! 

Reply

So sorry for the typo-filled reply…your video was just wonderful…it did take me back three plus years ago to my moment of dx…made me tear up and remember my fear and despair…I have come a very long way with education and support but that feeling rose up to the surface the moment you spoke…still raw…sometimes a good cry is just necessary…and then we just keep on moving forward! Again, thanks for sharing and I wish you well…Terry

1 like
Reply

Thank you for posting Mike. You expressed so well how so many of us felt at the start of this long and difficult journey: the loneliness, fear and tears. I hope your journey progresses without too many ups and downs. Best wishes

Maureen

1 like
Reply

Well done Mike. Thank you for validating my experience by expressing yours. You're a good man.

Jeff

1 like
Reply

Thank you for this...just what I needed. Honest,emotional and real. Shared on fb... x

1 like
Reply

You may also like...