my partner was diagnosed with CTCL at the beginning of the lockdown after a few years of being told he had echzsma and finally a tumour above his eyebrow raised alarm bells with a locum doctor. he was then sent for radiotherapy and Chemo, unfortunately the chemo available for CTCL made him dangerously ill and so he was tried on another treatment for 6 months which didn't work. He has now seeing a specialist at Guys in January but we are concerned about travelling on public transport during the pandemic and would prefer to drive to the hospital. But with fuel, congestion charge and parking this will be beyond our budget. Does anyone know of a some financial help towards transport to appointments that are available? many thanks Sam
Hi Sam and welcome to our corner of the Community.
Sorry to hear about your partners CTCL diagnosis.
I was diagnosed with CTCL way back in 1999 and although I was told “incurable but treatable but I would never be in remission” I did eventually achieve remission in Sep 2016 and I am living the dream, so this can be done - hit my name to see my story.
Professor Sean Whittaker at Guy’s is the leading expert in CTCL in the UK and although I did not go see him he did advise on my treatment plan. So your partner must go see him.
Yes you would have to drive, no way you go on public transport. As for the costs, you need to talk with his consultant/hospital as if they have referred him they should support him with some of the costs.
I am in a Inverness but had to go to Glasgow for a large part of my treatment and the Highland Health Board did help us out a lot.
You may also want to check out the Macmillan Support Services as they provide lots of information, some financial support or just a listing ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
Keep posting as we can help you navigate this journey. CTCL is rare so even more important to see the very best in the subject.
Always around to help out.
