Hello

Hi brainyscarecrow1  and welcome to this corner of the Community although I am sorry to see you joining the community………. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of T-Cell Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive type of T-Cell Non Hodgkin’s Lymphoma was then presenting so although my Blood Cancer ‘type’ is different 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.

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. 

Thank you.  I’m just learning how to navigate these sites and finding it a little difficult.  I find myself worrying that I won’t be able to find it again

Hi brainyscarecrow1  the simplest way to find ‘your’ activity/posts  in the Community is to click on ‘your’ community name this will take you to the groups you have joined…..

Near the top of ‘your’ page click on ‘More’ then ‘Activity’ and this will bring up all he discussion threads you have put up on the site but also any threads you have interacted with.

Hey brainyscarecrow1,

I have had CML for a while now and yes it is a lot.  It is perfectly understandable to wonder if you could have done something to prevent it happening or if you could have changed things.

I would encourage you to speak, ask questions and tell your hospital consultant/Clinical Nurse Specialist about how you are feeling.

It is good that you have a support network around you. Don't be afraid to open up to them on how you are feeling.

If it helps and you would find it useful, and if your hospital has it available, you may be able to have some talking therapy.

Some other charities that I would like to add to what Thehighlander mentioned for more information and support are:

Blood Cancer UK 

Leukaemia UK

Cure Leukaemia 

Leukaemia Cancer Society 

You are always welcome to chat on here if it helps. 

Hello, I completely get that feeling. I was diagnosed with cml 16 months ago and every hospital appointment I have I just keep thinking they’re going to tell me they were wrong and I don’t have cancer It’s been a struggle I’m still working with to accept it. The best thing I’ve found is talking about it to people, and reading up on it and reading others stories. I hope you are feeling okay

Thanks for the reply.  I went i to the Maggies centre attached to the hospital and found the most wonderful lady or i should say she fiind me.  We chatted today for a while and although it will take me a wee while to get my head around this thing. I am able to go back and see jer as much as i want. I am so hrateful to everyone who has helped me.  Hope you are all well xx

Good luck.  I hope you have someone to talk to x

That is so great that you have managed to find someone to listen to you and hopefully can be of some help to you.

Talking about things is good.

I hope that you are doing better very soon.

♥️

Good morning brainyscarecrow1  I am so pleased that you have connected in with your local Maggie's Centre….. you will find they offer various levels of support and when you sit round ‘the table’ you will be able to chat with other people who are navigating their cancer journey.

Every Maggie’s Centre has a long communal table that you can drop in past and have a tea or coffee and have a chat at…… I am over 10.5 years out from my last treatment (Allogenic SCT) and I still drop in past to see these folks when I am at hospital.