Good morning, everyone!
56M here, living in West London (and thank goodness for it, with its excellent transport links to the hospitals - and other places - I need to get to). I've just been diagnosed with CTCL, which was a bit of a downer but at least it explains the symptoms I've been having. I get itchy spots on my skin every day, but they're tiny (sometimes almost invisible). They itch like hell, then they disappear after 24hrs. Unfortunately then a new spot springs up for the next 24 hours, and so it goes on.
The only other thing is the night sweats - constant and rarely relenting. I'm sleeping on a towel every night. Apart from that, I feel wonderfully healthy. So saying, "I've got cancer" just doesn't sit right with how I'm feeling. I guess we all have an image in our head of what 'cancer' is, and feel like a fraud if we don't match that.
Apart from the CTCL I have a number of other amusing medical issues: epilepsy, scoliosis, varicose veins, tennis elbow, losing my hearing, I've probably left something off the list. And I'm neurodivergent on top of it all. Thank goodness I have a sense of humour.
After twenty-odd years making a (decreasing) living as a film and video editor, I've run out of patience with the lack of paid work. I'm training in accountancy with a view to possibly working with production companies on their finances. So this wasn't the best time for me to pick up another chronic illness. But at least I'm feeling OK.
Apparently my type of cancer is pretty rare. It was nice to hear I have an 'indolent' form. A lazy cancer. You want a lazy cancer, you don't want a cancer that's hoping up and down on the spot waiting for the 100m sprint to start. You want a cancer that's lying on the sofa eating crisps and going "oof" with the effort of reaching out for a Coke. You just stay there, mate. Don't do anything strenuous. I can manage just fine without you.
Hi WaywardPython and welcome to this corner of the community
I am Mike and I help out around our various Lymphoma groups.
I was first diagnosed in 1999/2000 aged 44 with the rare (8 in a million) hard to treat incurable types of slow growing Low-Grade NHLs - Cutaneous T-Cell (Mycosis Fungodes) Mycosis Fungodes when our daughters were 14 and 18…… (See my story)
I continued to work for 12 years in a demanding teaching job and yes had various skin treatments over these first 14 years then in late 2013 a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell -NOS (Not Otherwise Specified) NHL came along taking me to stage 4……. but this was all still very treatable.
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 as a family we celebrated 9+ years since my last treatment.
I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
Hi again first you may want to have a look at our dedicated T-cell lymphomas group as there have a few folks with CTCL in the group.
As scary as my journey sounds it’s a rather rare combination of conditions…… and I have to say that there are far worse storylines in many of the other groups covering the many serious cancers on the community.
If you are in the UK….. you may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment……. I have volunteered with LA for a number of years.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……. Specifically the monthly online group for Cutaneous Lymphomas
They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
