Hi, I’ve recently been told about this site, trying to reach out about any forums/support groups near to where I live,(west Sussex) but there are none, so thought I’d chat here… I was diagnosed with Mycosis Fungoides (mf) 3years years ago (at Guys in London) after a lump appeared on my foot in June 2019, then grow & opened, to the size of a grapefruit, as my clinical nurse said. In that November I had 3 bouts of radiotherapy, which killed it, then in January 2020, I could finally walk & drive & get my life back. Since then I have had 1 more tumour in March 2020, April 2021, which radiotherapy has killed them. However this August I found 2 tumours, again radiotherapy, but then I found more, all in my thigh, my PET scan shows lots, so I’m now awaiting an appointment for Chemo. I’m scared.
Hi @Helsbels I am so glad that you were told about our forum and that you had the courage to reach out to us.
It was also great to hear a bit about your condition over the last 3 years.
We might all have different diagnosis, but what most of us can relate to is feeling scared. It is natural and now you have us for support.
For me it is about the unknown and not being able to control it.
You are right there not many support groups around especially for each of our conditions.
However I think the one good thing to come out of Covid times is there are more cancer virtual meetings.
Perhaps your local hospital, Guys, Maggies, Macmillan or other centres might be able to point you i the right direction, but you are very welcome here on our online forum.
The Blood Cancer UK website and support line are also there for you.
I look forward to hearing more about you and please let us know how your appointment for chemo goes.
Look after yourself.
Welcome to the forum @Helsbels
I am sure you will find lots of support and information from everyone. We are all here to support- any questions ask away , share your thoughts and feelings , there will be lots of people who will have experienced what you are going through and will be able to share their best advice.
In the meantime do keep in touch and let us know how you are getting on.
Welcome to the site, my OH was diagnosed in June with Chronic lymphocytic leukaemia (CLL) and i have a medical background but have found this site so supportive and it has helped me immensely when i have struggled. I hope that you find the support you need here.
Hi there and sorry you are scared.
You have been through so much already and you will come through this
Being scared is very normal.
Wishing you all the best going forward.
Hi @Helsbels I have been thinking of you and I just wondered if you have had your appointment yet.
Look after yourself