Scotland Support Group

[Mark McConway]

Yesterday, our group met at a lovely venue - Franklin and Sloane - in Kilmarnock, East Ayrshire.  We've been deliberately using different place around Scotland to spread the travel burden as equitably as we can.  This has the added benefit of keeping things fresh and interesting for all of us.  We're visiting places that we may not have seen before and that's been good for keeping us motivated to attend, if we needed any, that is!



Although George, Danny and Fiona couldn't make it, we were joined by Anne and Claire who brought with them stories of their own journeys with Myeloma too.  These were interesting and, in common with some of our other experiences, shocking at times.  From listening to others, we're gaining insight and sharing information on what has been helpful - at an individual level - in providing comfort whilst treatment is taking place.  Things that came up in discussion ranged from long delays in getting a diagnosis of Amyloidosis through to the use of complementary medicine and a lot in between.

Our next meeting will be in Glasgow in mid October.  If you would like to join our group, just get in touch and we'll add you to our email list to keep you updated on dates and times of meetings.  We are a friendly bunch and are happy for you to bring family members or friends with you when we meet up.

Mark

[1957]

I would like to join the group and hopefully meet with you all in October. I had the pleasure of meeting Ann, Claire and Brian at a Myeloma support meeting in February with my partner Robbie. I am about to start another course of treatment with Revlimid and Dexamethasone this time. I have had 3 good years of remission after CTD and then Velcade.
Best wishes
Fiona Taylor

[georgeturner]

June Meeting

The next Glasgow Myeloma UK Support Group Meeting is on Thursday 29 June, 6.30pm – 8.30pm at Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow.
Myeloma is closely linked to AL Amyloidosis and the group welcomes people affected by all types of Amyloidosis. Some of our group have been going along and been made very welcome. It's a very informal and friendly group. If you are interested, come along and join us for tea/coffee and a chat.
See link below.

https://www.myeloma.org.uk/events/event/glasgow-myeloma-support-group/

[RabC]

Not new to Amyloidosis was diagnosed 2007 but still not sure which type if any would be nice to meet other people it times quite a lonely disease when you have know one to talk to about it. I from Cupar, Fife.

Have been ill for a long time and collected a few along the years but amyloid is different and less people to talk to.

Not been to. London in a couple of years now due to other health problems. Should really get back down but after last consultation there didn't seem to be any need. The answer was we have no idea how you got it we don't know what type you have but your levels are good just keep with what you are doing. Sometimes an answer would be good, thanks for reading Rab.

[georgeturner]

April Meeting

The next meeting in Glasgow of the Myeloma UK Support Group is on Thursday the 19th of April 2018 from 6.30pm – 8.30pm at the Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow G12 0YN.

Myeloma is closely linked to AL Amyloidosis and this group welcome people affected by all types of Amyloidosis. Some of our group have been going along and been made very welcome. So, if you are in the Glasgow area and the date and time are suitable, why not come along and join us?

See attached link for more information.

https://www.myeloma.org.uk/how-we-can-help/meet-others/myeloma-support-groups/find-a-support-group/

[Linda R]

Hello George,

Thank you for the information. It was so nice to meet you at the last Myeloma UK Support meeting in November. I shall be in London next week, for my first visit to the NAC, but should be back in time for the meeting.

Please also add me to the group. I have had a busy few months since arriving back in Scotland, but feel now that I can devote some time to getting to know other people here.

Linda

[Mark McConway]

Hi,

Just wanted to let people know that our Scottish Amyloidosis Patient Support Group is having its next informal meet-up at The Fruitmarket Gallery Cafe beside Waverley Station in Edinburgh, at 1200 on Saturday 28th April 2018.

If you haven't already come across the group - and would like to join us - we'd be really happy to see you.  We started out as a group of three in 2014 and have grown to over 20 members, not including relatives, who are also welcome to join us. 

The format is completely informal.  We share stories, get to know people who've gone through similar experiences as our own - and just give one another some support through chatting.  Our members have a variety of types of Amyloidosis so it's quite possible that you'll meet someone who knows exactly what you might be going through.  If you are maybe not well enough to attend - but would like a family member to come along - they'd be welcome too.

If you want to be included on our email list - and\or want to come along next week - drop me an email at mcconway.mark@gmail.com

Mark

[pgarrud@me.com]

Hi Mark:

I am based in Edinburgh, about 2 miles from Waverley Station.

I have what my cardiologist named as a “working diagnosis” of amyloidosis. As it happens, I have my first 3-day appointment in London the following week: 2 - 4 May.

I would love to (try to) attend the get-together this Saturday. Thought I would ask in public in case it might be inappropriate since I haven’t yet been properly diagnosed.

Pam

[Mark McConway]

Hi Pam,

You'd be more than welcome to meet up with us.  If nothing else, we might be able to tell you a little of what to expect at the NAC.

Just drop me an email on mcconway.mark@gmail.com to let me know if you'd like to come.

Kind Regards


Mark

[Mark McConway]

Today, our Scottish Amyloidosis Patient Support Group met up in Edinburgh at the Fruitmarket Gallery Cafe near Waverley Station.

Our numbers are continuing to grow and, although not everyone can make it to every meet-up, we always enjoy meeting fellow-patients.  I'd encourage people in other areas to think about forming a group too.  Being able to talk to other people who have, perhaps, travelled the same route as you, is genuinely uplifting.

It was great to see our new members - Pam (and husband Trevor), Kristian (and partner Nicolle) in person.  As ever, we shared stories and had a few laughs too.  Ours is an easy group to fit into so, if you're anxious about meeting other patients, don't be!  You'll be made most welcome if you want to join us at the next meet-up in the summer.

As a group, we also know that some of our members have been under the weather at the moment - some more seriously than others.  You know who you are.  We all send our love and strength and are willing you towards recovery.  Keep strong!

Kind Regards to All!

Mark

[patpinchin]

 
Hi Mark,

 I have been enjoyably reading about the activities of your amazing Scottish support ever since day 1 several years ago. You seem to have the prefect recipe for a successful amyloidosis support group for patients and their families with different types of the disease.

The Scottish Amyloidosis support group has to be the strongest most successful support group in the country. Always so very good to read about your activities in different locations in southern Scotland. Pleased to know you all had such an enjoyable lunch/time in Edinburgh, my second favourite fine Scottish City. My favourite is Glasgow. Big fan of Kelvingrove and the  School of Art with the
C Rennie McIntosh Exhibitions, in art and furniture. As a Glaswegian yourself, I know you will share my love of Glasgow. 

There are two quite newly diagnosed Scottish patients, one living on the edge of the Highlands, the other a Shetlander who would probably also benefit from joining your group. Currently they are both receiving treatment but if all goes well it might be worth considering contacting them if they would like that to happen. Just let me know if you think it might be possible to include them in any way at all to ask if they would be interested and willing. The daughter of one of them is a member of this forum, so she might see your post. I know her a little and the daughter of the Shetlander too, so could contact them if you wish and think it’s a good idea.

More amyloidosis support groups are badly needed across the country. If I did not have oral amyloidosis with such distressing symptoms which mean I find talking/conversation far too unmanageable, I would have started a support group here in Dorset. The need is as you rightly is so say well worth considering for anyone who feels they can open a support group in whatever way they are able to.

Good luck and thank-you to anyone who tries to follow the fine example of the Scottish support group.

[georgeturner]

The next meeting in Glasgow of the Myeloma UK Support Group is on Thursday the 6th of September 2018 from 6.30pm – 8.30pm at the Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow G12 0YN.

Myeloma is closely linked to AL Amyloidosis and this group welcome people affected by all types of Amyloidosis. Some of our group have been going along and been made very welcome. So, if you are in the Glasgow area and the date and time are suitable, why not come along and join us?

See attached link for more information.

https://www.myeloma.org.uk/help-and-support/support-groups/glasgow-myeloma-support-group/

[Mark McConway]

Today, we had our 10th meeting of the Scottish Amyloidosis Patient Support Group in the centre of Falkirk.  I think that, after nearly 4 years at it, it is probably fair to say that we have a flourishing, supportive group.  It's nice to see that people still want to be a part of this - and actually see the benefit of simply chatting.

Our discussions covered everything from symptoms being experienced, attitudes of GPs, hospital medics, perceived changes at the NAC and holidays, families, work... and everything in between.  What started as a hesitant meeting of strangers a few short years ago has evolved into the warm, friendly circle of support that is was meant to be.

Sadly, we have seen the passing of both Danny and Pam this year but hopefully our group can still be of some assistance to their families if they'd like to join us in the future.

All the best

Mark

[georgeturner]

Thanks Mark,
A very enjoyable and supportive meeting. It was great that Jude Leitch from ARC UK came along and provided us with some useful information. Hopefully Jude will come along to some of our further meetings.
I thank you too, for taking over the organisation of our meetings. To anyone who is interested in joining us, Mark is the person to contact. I'm still available to contact, but due to deterioration in health, Mark is the main contact. 

[Mark McConway]

Glasgow's WEST Brewery and Restaurant was the venue for our 11th Meeting and lunch.  In total, there were 19 of us in attendance, including partners, carers and people who have lost someone close to Amyloidosis.  The remarkable thing about these meet-ups is that, no matter what people are enduring individually, they are giving support to others in a relaxed and friendly atmosphere.

Today's mix was almost a 50-50 split between new members and 'regulars'.  As our numbers are growing, we get the opportunity to meet even more, genuinely lovely, people whose paths may not have crossed with ours in other circumstances.  We come from a variety of backgrounds but have been united by this particularly unusual disease.  The friendships created - and the care that flows from them - are true positives - if you are searching to find any - from being an Amyloidosis patient in this part of the country.

On the way out of the restaurant, we asked a young man to drop the pile of wood he was carrying to take our photo.  He was brilliant; a Glaswegian with split-second wit that got the best out of us for the photo.