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CML - Meetup

Hi everyone,

Merry Xmas and early new year wishes.

I want to start the new year with something positive. I am not sure if these have been arranged before but wondered if anyone would be interested in a CML meet-up?

I am thinking it would be good to meet people going through similar struggles, to share stories support each other and get to make some new friends.

I’ve been struggling a little lately. I was DX in March and so far responding well. I was coping very well for sometime but the last couple of months mentally have been quite tough, which I guess is normal considering the circumstances. I am at a point where I need to do something positive with my life.

I live in Kent the Southeast of the UK but wondered if anyone would like to meet-up as a group somewhere central maybe London? Maybe in a pub share a drink or 2 and maybe a meal depending on numbers..

Just gauging interest at current but if you are interested please let me know I would love meet up. I have created a new email here alexmcpherson1980@gmail.com if anyone would like to PM me?

Alex

Hi Alex

I would be keen on meeting up with others who are around depending on timing. I do not know anyone with any form of blood cancer  and would love to meet with others who understand the disease and who's first question isn't "so are you going to go bald?"

 

Im coming to the UK from around 3rd to 16 February for a second opinion ( my Dr here doesn't know what a PCR is or why its relevant)  and to get some help with non medication questions ( my GP here calls it The Accessories)

 

I have found there is a CML support group meeting in Hammersmith on 16 Feb which I might stay on for. So let me know if anyone is around and it would be nice to meet.

 

Thanks for the initative

 

Hi, I don't live in the UK but I think what you're suggesting is a fantastic idea. It's something I have thought about doing in my part of the world too! I was diagnosed 3 years ago on this very day, I live in the Irish countryside and I have never spoken to anyone with the same disease as mine. I've always felt like I was the only one in the world that was going through this because nobody I knew had ever heard of the disease including myself. I was scared and afraid to look up anything about it, afraid to ask questions incase I couldn't deal with the answers. I didn't trust my body anymore I felt like I didn't know who I was, I felt there was an enemy living inside me. During the day I held it together because my boys were only 7 and 11 and I couldn't tell them. They knew there was a problem with my bloods but they didn't know the full story. At night I cried with my husband, I couldn't sleep or eat very much. I went to see a councellor and very slowly, I don't know when exactly but I started to be able to talk about it without crying, I began to sleep again without sleeping tablets, I began to accept. It's 3 years and I have been blessed. I had a major molecular response very early into taki g my medication (nilotinib) I still don't like going for results every 6 months but it has to be done. I finally told my children 6 months ago which was hard but I'm glad I finally was able to do that and to move on another step. They were amazing and incredibly understanding for people so small. I hope you get peace of mind and thanks for posting today, I wish you all the bestate and a very happy new year ☺ Nell

Hi Fiona,

Thanks for replying to me.

I would be keen to keen to know more about the Hammersmith Meetup too. Hopefully some people will be available to meet up in London sometime and I guess I will have to see if I have any takers. If you are comfortable meeting up (Which I understand if you're not) that would be cool. I work in London so can be available most days after 5pm.

Lets see how many would like to meet up here. I am assuming many people wont be available but thought it would be good to get something going and if popular do it on a fairly regular basis. I've also not met any other CML'ers and it can be a lonely place even with this wonderful support group. No-one quite understands what your going through unless you are going through it yourself.

Hope all is going well with your treatment.

All the best

Alex

Alex and all, I live in the US but will be in London last week of March + early April. You have a great idea here and I would definitely participate if something comes together while I’m there. I share your feelings (dx April 2017) and even find myself wondering what is the point? It is a quandary. To be given such a gift (TKI) but feeling a bit lost anyway. Thank you for this. Many blessings in 2019.

Hi Martina,

Yes its a lonely place having CML. Doctors just presume you'll be fine which most of us will but we have another battle going on psychologically. It's one thing having a serious life threatening disease but being told you'll have one for life (Best case scenario) is a difficult pill to swallow. (No pun intended) I am by no means complaining as I know many Cancer sufferers would probably swap their illness with ours in a heart beat but it's all relative isn't it.

I can completely relate to these comments "I was scared and afraid to look up anything about it, afraid to ask questions incase I couldn't deal with the answers. I didn't trust my body anymore I felt like I didn't know who I was, I felt there was an enemy living inside me" I am feeling exactly the same. I too have 2 small children both girls aged 5 and 8 and its hard having to pretend all is ok. As far as I am aware since my last results I am doing well. My 6 month PCR was 0.7% so I am hopefully on the way to achieving MMR by April next year (My 1 year anniversary). It is all very anxiety inducing and has made me on high alert, any odd sensation, change in my body, pain or ache really makes me nervous, I believe I have suffered from anxiety for many years and since diagnosis its increased somewhat naturally, I don't want to go to the doctors for the anxiety as I believe I can handle it through more natural ways. I am doing all I can to stay on top and most times I cope pretty well, I meditate daily which really helps to slow my mind and I've started running again to release some of those natural happy drugs lol. I will get there one day.

I am really hoping that someone would like to meet up, as I said I think its something positive and a way to give something back. I want to start the year feeling at least good about myself as its stripped a lot of my old self away. I do feel a part of me did die when I got my diagnosis but I am trying to create new ways to cope, to accept and move on from what is a very traumatic experience which I am sure many can relate too. I am 38 years old and not afraid to admit I have cried a lot on and off its certainly a rollercoaster of a ride. Hopefully with some adjustments and some new friends to have some nice conversation not just doom and gloom is a great way to help all of us smile again.

You take care. If you ever also need to talk my email is alexmcpherson1980@gmail.com I am always here to listen to anyone.

Alex

 

 

Hi Justine,

I'd be more than happy to meet up with you around those dates. As I said I work in central london (Cannon Street) Monday to Friday so I am in town most days.

It certainly is a quandary (the perfect word for it!) and mixed bag of emotions isn't it? I just feel that being with people who REALLY understand what it's like would really help us all. Kind of like an AA meeting but for CML'ers lol, way more casual than this just a drink and some chat. Doesn't have to be all about CML but just to meet those that are going through the same thing is constructive isn't it.

If you want to pm me you can alexmcpherson1980@gmail.com I created this email specifically for this.

Take care and all the best with your treatment too.

Alex

Hi Alex,

I work in The City as well. It would be nice to grab a coffee some time - as you say, it’s difficult for people who aren’t patients of CML to understand some of the nuances of living with it. I’m out of the office for the next couple of months (paternity leave) but will be back early March.

David.

Hi David

That would be great. When I first got CML I saw and read many of your posts and they really helped.

A few people have emailed me privately so meeting as a group or adhoc one to one is fine with me. I work just off Cannon Street so I am more than happy to meet for a coffee after work.

It would be great to meet fellow CML’ers as we are a rather unique group of individuals ;-)

All the best with your paternity and hopefully meet sometime.

Alex

Hi Martina and Happy New Year to everyone.
I live in rural Sligo and can understand how alone you felt after your diagnosis. I often thought that some sort of support group is needed here for the rare types of cancer than very few know about. You don't feel a part of the general "cancer" population.
I am a nurse so had some knowledge of blood results etc so I guess that helped me understand CML a bit and get my head around it. I was diagnosed 13mths ago and am also on Nilotinib.
I have also found Liz via this forum. She also lives in Sligo and is 3yrs ahead of me on the CML journey. We message each other and have met at Haematology Clinic!
Please feel free to make contact whenever you need to. You have had a tough first few years. There has to be more of us around Ireland and it does help to share your story.
Joanne x

Hi, it would be great to meet up but it’s abit far for me over in sunny Preston !  I remember struggling for years after my diagnosis but 15 yeArs later and I’m still plodding on. Scary thoughts used to run through my mind all the time and even now as I approach my 3 monthly appointments I get nervous . 

The only thing I can advise is keep talking xx

Hi

Many thanks for replying. Ahh that’s a shame I just thought it would be a good idea to meet and talk to those who are going through the same thing. I know I am not alone and that helps.

And talking always helps. 15 years wow that’s encouraging. I’ll be glad when I don’t have the anxious thoughts too!

All the best

Alex

Happy new year everyone.

Just an observation but many people have reached out to me personally via my email rather than through the site. We all have our own reasons but I wanted to thank those that took the time to reply to me. As a group it’s looking less likely possible at this current moment. I have made a few arrangements to meet people personally over the coming months.

Please don’t feel afraid to reach out on here or personally we are in this together even though it probably feels like a lonely journey. Again my email isalexmcpherson1980@gmail.com if you want to just talk personally or would like to meet. I’d feel privileged to meet any of you.

All the best with your battles CML or not.

Alex

Hi everyone

This meetup sounds like such a wonderful idea and I wish I lived in the UK!  I'm all the way down here in South Africa, but I would love to meet anyone from this forum who ever travels here, so I'm extending an open invitation to drop me a message if anyone is ever in Johannesburg.  If there is a date when many people will meet up, I might even fly to London for the event.

Good luck and all the best for 2019 everyone.

Martin

Thank you Martin!

I have just seen your amazing email and I intend to reply in detail to you tomorrow. And I want to thank everyone that has messaged me here and also personally via email.

I’ve certainly come to realise that there are so many lovely people out there who will share intimate details about there struggles with CML and I feel privileged and less alone that people have opened up about their struggles. I’ve always worn my heart on my sleeve and I just feel really thankful for all those that took the time to write to me. I will always be around night or day to help anyone if I can. I can promise you all I feel so much better after the messages I’ve received. You’re a great strong bunch of people!

Very happy new year to you all!

Alex

Martin 

I feel the same way. I was waiting for Alex to get enough people to agree for a meetup and once he confirmed the date and enough people I was seriously thinking about flying to London for the meetup. I live in the UAE 

I recently had a dream that I took all the people on this forum for a nice dinner in London. 

Hi Joanne, it was great to hear from you. I was just having a look at the site again this morning and I was delighted to see your reply and that you're from Co. Sligo, so am I! We probably have the same Doctor ..Dr Hodgkins ?
It's all thanks to Alex who started this thread, ( Thankyou Alex) because even though I've been a member for over 2 years I've never posted on the site! I'm not big into social media and wasn't 100% sure how to post properly, my profile photo kept coming out sideways 😃 ......but I'm learning! !
It would be nice to meet up for a coffee in Strandhill in Sligo some day. Thanks for reaching out, it really helps to know that we're not in this alone and it's so uplifting to read all the positive stories out there. I find meditation, yoga, walking , listening to music and doing anything artsy and crafty helps me to stay strong and positive.
I hope you had a lovely Christmas and I wish you and every one on this site a Happy and Healthy New Year.

Martina xx

Hi Joanne, it was great to hear from you. I was just having a look at the site again this morning and I was delighted to see your reply and that you're from Co. Sligo, so am I! We probably have the same Doctor ..Dr Hodgkins ?
It's all thanks to Alex who started this thread, ( Thankyou Alex) because even though I've been a member for over 2 years I've never posted on the site! I'm not big into social media and wasn't 100% sure how to post properly, my profile photo kept coming out sideways 😃 ......but I'm learning! !
It would be nice to meet up for a coffee in Strandhill in Sligo some day. Thanks for reaching out, it really helps to know that we're not in this alone and it's so uplifting to read all the positive stories out there. I find meditation, yoga, walking , listening to music and doing anything artsy and crafty helps me to stay strong and positive.
I hope you had a lovely Christmas and I wish you and every one on this site a Happy and Healthy New Year.

Martina xx

Here is a letter I received from Hammersmith Hospital today. I will be going and thought some of you may like to attend too so here is the information

I have attached details of the next meeting, it is purely for CML patients and we usually have a round 20-30 people attend, we have a Consultant and Nurse attend and they will talk about current treatments and are on hand to answer any questions you may have, the group is extremely supportive and there is always a mixture of newly diagnosed and also patients that are quite a way down their journey.  You would be more than welcome to come along

 

CML Patient-Carer Support Group

The team at the Hammersmith Hospital, Leukaemia CARE and Steven Davies would like to invite you to come to the CML Patient-Carer Support Group.

Date: 16th February 2019
Venue: Haematology Outpatients Clinic, Catherine Lewis Centre,
Hammersmith Hospital, Du Cane Road, London, W12 0NN
Time: 10.30am – 1.30pm

We will be joined by Dr Dragana Milojkovic, Consultant Haematologist and Irene Caballes, Clinical Nurse Specialist, who will be on hand to answer your
questions on CML. 

There is free parking at the venue in the Wormwood Scrubs Park located between the hospital and the prison off Du Cane Road.

All are welcome at the meeting and you are invited to bring friends, family and carers who may find it useful.

We hope you can come along and we look forward to seeing you there.

Yours sincerely,

The Patient Services Team
Leukaemia Care

Hi again Martina.
That is such a coincidence that three of us ladies are from Sligo. Our consultant is obviously a fan of Nilotinib also as we are all on it!
I live near the Mayo border so not near Strandhill but I am due next Haem appointment at the end of Jan so I could divert to Strandhill that day if that suits. If not we will sort some more suitable day. I will mention in to Liz also.
Sounds like you are keeping very busy with those activities and a young family. I just about get a walk in with the dog.
Bye for now
Joanne.

You are most welcome guys and if you are all from the same area and you meet-up well my job is done :-)

I am getting lots of lovely personal emails and the subject of meeting up defo seems like something we could all do with. As a group it’s looking less likely for now but I have managed to get some adhoc ones in for the year and hope that they actually happen.

All the best to you all!

Alex

Hi Joanne, it would be lovely to meet up with you and Liz ( if she can make it) around the end of Jan. I work every day until 3pm so the earliest I could make it would be 4pm I'm not sure how those times would suit everyone but hopefully closer to the time We can work something out. You can contact me on this email either, noellehiggins1@gmail.com
All the best xx