Hi,
Like most I'm not really sure where to start. I have been diagnosed with a rare T cell lymphoma and I am due to start Chemo on Friday. I've been told that is not curable and remission is the only way forward.
I'm trying to keep positive for myself and my family and working on one step at a time (Friday being the first big step). I've been worried about the future, work, family and where this will all go. Every time I think about making a plan, something tells me well don't do that you might not be able to, or capable of or worse be here.
I speak to my wife, but its hard as she is obviously upset and I find that hard to cope with. I know she needs to be able to talk about things and how she feels but I just find it hard, its so all consuming from the minute you get up to the moment you go to bed.
Not sure what else to say, but thank you for taking the time to read.
Hello Charlie (Charlie7)
A warm welcome to the Macmillan Online community, although I am so sorry to find you here under these circumstances. I am Brian one of the Community Champions here on the Community.
The Community is divided up into various cancer specific groups and to connect with others on the same or similar journey I would advise you to join the following groups (just click on the links I have provided):
Living with incurable cancer forum - patients only
Once the page opens up, just click on "join" on the black banner at the bottom of the page. Once you have joined a group you can either copy and paste or repost your original post in the "New Here - Say Hello" section of the group - you will be assured of plenty of help and advice, Mike (The Highlander) the Community Champion who covers the blood groups is on holiday but I am sure he will catch up with you,
Don't forget our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) is there for you and your wife - please do give them a call.
If I can do anything for you - help navigating the community etc - please feel free to let me know.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Charlie7 and a warm welcome from me…… as my friend Brian Millibob says I am on holiday at the moment but just wanted to give you some encouragement.
As Brian says do join our dedicated T-cell lymphomas group and put up a post and please do tell us what exact type of T-Cell NHL you have.
I was first diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell (Mycosis Fungodes) NHL… a type of slow growing Low-grade non-Hodgkin lymphoma) ……. then I eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
When I was first diagnosed our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 when my second T-Cell came along I had 2 years full on treatments…….. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and I am now 9.5 years since my last treatment.
I am living a great life and we are in Malta at the moment having a great time…….. this can be done.
I will keep an eye open for you in the T-Cell Group.
