“Cansopause”

Hi BFin and welcome to this corner of the Community although I am always sorry to see people join 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 Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of 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.

We also have our Ask an Expert section but do allow a few working days for a reply.

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.

Sleep patterns can be challenging. I tried to keep some simple activities going on during the day and if I did nap during the day my wife woke me up after about 45mins this helped me sleep during the night….. but story is rather complicated See my story as I had to have significant treatments mainly due to  me developing my second more aggressive type of T-Cell NHL in late 2013……….. but I am 9 years out from my last treatment and turned 69 last month and I doing great.

Always around to help more or just to chat ((hugs))

Hi Mike, 

Thank you for reaching out and for your kind response. I was curious about your own journey and read you bio and my goodness man, you have been through it! It was like reading a medical paper, of which, I did not understand most of it lol. It is evident that you are a survivor, you never gave up, and that you have a great sense of humour, my experience with most Scots!! I'm Canadian but come from the Matheson clan so you and your people are near and dear to my heart, and I have a huge family living in Scotland. I hope that your journey continues to be a positive one...I hope it's ok that I laughed out loud at your Alfred Hitchcock imagery of the shower scene...I too have used humour to deal with my own diagnosis. If I wasn't laughing, I'd be crying. Thanks for all the resources and take good care.

:) Brooke

Hi again Brooke BFin …… it’s good to connect across the miles.

It’s amazing the connections that people have with our wee nation.

My wife is a MacNeil of Barra……. her family line comes from the Isle of Barra and in Highland Clearances in late 1700 when the rich land owners wanted sheep on the island not people…… they were shipped out to Nova Scotia….. 

Her grandad was on the whalers out of Nova Scoita and eventually settled in the North East of Scotland at the main whaling port of Peterhead and the rest is history.

Obviously all the links I gave you are UK based so not a lot of help there but I see you have started posting in the group so let’s see who is looking in to connect with you.

Hi again,

Yes, for such an enormous world, it does seem very small at times! My great great grandparents immigrated from the Isle of Skye in 1888; with their 8 kids, and would settle in Manitoba. Most of the family would eventually return to Scotland as the land was hard to work and not fertile, but my Gramma's dad (my great grandfather Charles) stayed in Canada, with another brother going to New Zealand, with some of their siblings either returning to Scotland, a few stayed behind in BC/prairies. I find family history fascinating and I wish my grandparents were still alive so I could ask them so much more. My other great grandfather immigrated from Denmark and had a ticket for the Titanic, but missed it by one day! Good thing he missed that ship, otherwise you and I would not be chatting lol. 

Thanks again for the resources, even though I cannot access them, it has been helpful to read other's journeys and that has made me feel less alone. Hope you are well and that you have a happy Christmas!! 

 :) Brooke