hello

Hi Padmalaya and a very warm welcome to the Macmillan Community but so sorry to hear about your journey.

I know the journey rather well having had 2 Allograft (donor) Stem Cell Transplants (Bone Marrow Transplants) in June 2014 then in Oct 2015 for my two types of Non Hodgkin’s Lymphomas….. the first was diagnosed in 1999 when I was 43 then the second appeared in 2013.

Stem Cell Transplant is a challenging journey……. but I would be very impressed if you were playing your drums at 5 weeks post SCT….. it took 2 years for my hands to clear of Peripheral Neuropathy to allow me to even hold my guitar let alone play it…… how long are you post SCT.

I have been volunteering on the community for a good number of years and I have to admit to not hearing anything about polar cell cancer…… do tell me more about this type of cancer.

Hi Mike

thanks for reaching out, I hope your well, the easiest way to talk about my condition is to describe my experience which started approx 12 months ago, the first of the symptoms appeared when I was facilitating on a music retreat, also I was in good health and running 5km a day over the hills, I started to have a lot of discomfort in my legs and arms which then extended into lower back and became unbearable ,within a month i had a diagnosis through bloods and was administered into hospital for 5 weeks which was a rough time, after hospital i was on a range of medicines and then on a list for a transplant during this time i had 2 courses of  kemo and experienced total hair loss( still hair free) i was able to manage during this time but was very tired a great deal of the time and had to adapt to a new way of being, post bone marrow transplant I have been extremely tired but still able to manage but do need lots of rest and will not know if the treatment will be a success yet, my idea for the blog is for there to be a space to explore creative activities to deal/ express them selves so lots of art/ music/nature based ideas,and through the imagination,an example of this would encouraging people to take up a musical instrument , on the music retreat Ii have an exercise called reframing musical identity’s which is a way of exploring people’s relationship with music and then setting up a system of practice to get up and running, its all early days and my plan is to build up a libary of ideas and then launch into a blog and this could become hopefully a source of inspiration. Also I am obsessed with drumming so getting playing again is really important to me.   Cheers

Also I should have described it as Leukimia

Hi again Padmalaya  and thanks for this information.

Sharing your journey and the ideas about a type of blog are good.

This New to Community area is like the Community reception desk so it’s mostly new people looking to connect with others who are on the same journey as them, who are then signposted to our dedicated groups and mostly don’t return to this area.

There are various ways you can use the community platform…..

You could join the most suitable of our 4  Leukaemia groups relating to your condition and have an ongoing post/blog there….

Acute lymphoblastic leukaemia

Acute Myeloid Leukaemia

Chronic myeloid leukaemia

General Leukaemia

You could use the sites General Blog Facility - search the options at the top of our community page.

You could have an ongoing post/blog in our dedicated Stem Cell Transplant group.

You could put up your story and thoughts as your profile……. See my story as an example.

or

You could have an ongoing post/blog in our dedicated Life after Cancer Group

Hi 

this is super helpful I will explore options over the weekend and start taking steps to move forward

thanks