Hi
Well its been an interesting few weeks, I've been busy blaming a whole bunch of stuff on the dreaded menopause including all kinds of skin problems. Then I thought I had boil (to add to the joys of a middle aged body) turns out it's T cell lymphoma.
That's how I've ended up here, (so far this site has been tremendously helpful and informative - thanks MacMillan and in addition to my cancer research monthly donation I pledge to set up one for MacMillan too!)
So, I'm new to this cancer malarkey and keen to learn from others and provide moral support to others too if I can.
Hi and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your blood cancer diagnosis...... cancer malarkey is a good description 
I am Mike Thehighlander and I help out around our various blood cancer groups...... I was diagnosed way back on the 10th May1999 (coming up to my 22nd birthday - another cake) with my type of rather rare Cutaneous T-Cell Non Hodgkin’s Lymphoma (Skin Lymphoma) often called Mycosis Fungodes by Dermatologists.
There are a number of types of T-Cell but it sounds like a skin type you gave - what have you been told?
The Community is organised into cancer specific support groups and I see you have already joined our dedicated T-cell lymphomas group, this will be a good place to connect with patients and families navigating the same type of cancer treatment journey.
Do go to the group by clicking on the link above then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
I will keep an eye open for you as this will be the best place to keep your support and ongoing discussions together ((hugs))
Hi again , yes we got into celebrating each milestone over the years and why not?.... once you get your head round what Cutaneous T-Cell Lymphoma (CTCL) is you will understand that you are going to be around for a long time. As my consultant once said “Mike CTCL is a slow burn type of Lymphoma and expect you to die with it not from it”
CTCL is rather rare with only about 350 cases found in the UK each year. At this point in time CTCL it’s incurable, very treatable and yes, times of long term remission can be achieved.
Back in 1999 when I was diagnosed I was told there would be no remission so when I was told I was in metabolic remission in Sep 2016 we had a great party.
It is best to think you have a chronic health problem that can bring challenges from time to time but you will learn to live, work, relax...... do what you want while living with it.
There are some famous people who have lived with CTCL. Murray Walker of F1 fame was 98 when he passed away and lived with CTCL on and off throughout his life and only had some 2nd line treatments.... you may not be old enough to remember this but B.A.Baracus who was Mr T in The A-Team has lived most his life with CTCL.
It interesting you are talking about fatigue. I can honestly say it took 14 years before I could say I was experiencing fatigue but this was due to the full on treatment I was having. Having volunteered on the Community for a number of years now and talked with so many people there is something to be said about a type of fatigued caused by worry and stress.
I am always around to help. I see you have put up a reply in one of the threads in the T-cell lymphomas group so let’s see if Mary us still looking in but in the CTCL journey sometimes nothing happens for years so she may not be looking in.
Please stay away from random Google searches, it will scare you witless as the information is often well out of date. But do check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service ((hugs))
