Hello
My name is Merse1806 and my wife has been diagnosed with CML and is due to start Chemotherapy hopefully this week.
We are both very scared due to not knowing. My wife is very well physically still very active bubbly and asks me at least 3 times everyday "am i going to die?" I am staying positive on the outside but inside i am falling to pieces. I cry when alone scared.
We are told her treatment after addmittence to hospital will be Days 1 , 3, & 5 chemo tjrough we assume her pic-line followed by up to 3 weeks in hospital recovery hopefullu just tbe one cycle.
The follow up will be a Stem cell transplant at Kings hospital in London.
I work full time my boss has been understanding and appreciates what i am going through.
This is my first entry in tbis group but will not be the last.
Hi again Merse1806f95263 and well done navigating across to this corner of the Community although.
I don’t have Chronic Myeloid Leukaemia (CML) but as I said in your post in the New to Community I have been living with and treated for 2 rare types of T-Cell Non Hodgkin’s Lymphomas since 1999 when I was then 44……. so I most definitely appreciate the challenges of navigating this journey rather well.
CML is on the rare side, but let’s look for any group members to pick up on your post and get back to you. You can also click on the main ‘CML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
During my 25+ years treatments I have had 2 Allograft (Donor) Stem Cell Transplants with cells from my brother (June 2014 then Oct 2015)……
I have just passed my 10 re-birthday and yes, my 4 granddaughters take pleasure in me having a cake and being told that I am the second youngest in the family ;)
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey was rather complicated (See my story)….. yes challenging but totally worth it……. I turn 70 in a few days and I am living as good a life that any fit and healthy 70 year old can live.
We do actually have a dedicated Stem Cell Transplant support area where members from every blood cancer type get and give support around the rollercoaster that is SCT….. but many people do tend to live on from the group once they are out the other end of the SCT tunnel and look to get on with life.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a person with CML in it so worth checking.
Always around to help more or just to chat.
