General Discussion

Baxter2

Glasgow Patients day 24th Feb........who’s going?

Hello all!

Just wondering who is going to the patients day in Glasgow this month? Im going with hubby, @Highkaren and hubby, @mem and hubby and I think @Alan C Is anyone else intending going? It would be so nice to meet up with other forum users as long as we work out how to identify one another! ?

K????❤️

Baxter2

En route to patients day in Glasgow. Looking forward to meeting my fellow forum buddies ?

Kareno62

Hope you all gave a lovely day @Baxter2 :x:

charly

I’m so disappointed I can’t make it - I thought I would but work commitments have scuppered my plans - would very much appreciate any info or feedback from any one who is attending - or if anyone fancies meeting up - I’m in the Borders but happy to meet up anywhere in the central belt. Hope it’s a good and useful day for everyone who is able to make it. Hope to hear from some of you! Charlotte :x::x::x:

DMR700

Great to meet @Baxter2 and @Highkaren at the Glasgow Patients Day today.

Whilst there were some good speakers and informative presentations, I did feel it was largely focussed on stage 1/2/3 success stories with not enough on coping with a stage 4 prognosis. The patients view presentations were a great idea but I felt both were similar stories. Would have been nice to see a different perspective too.

As it happened, we ended up sitting in our wee stage 4 gang! So I still got to speak to people going through similar experiences and that was invaluable.

It really hit home today just how much specialists have their own personal preferences and opinions and so just how important it is to seek 2nd (3rd, 4th...!) opinions. And if you don’t ask, you don’t get!!

Baxter2

I really enjoyed patients day yesterday and like @DMR700 said, great to meet up and sit with the stage 4 gang!

It was so lovely to meet @mem at last and her hubby, @Highkaren and hubby @Ally13, @DMR700 and hubby @Alan C and @"Sarah-support and information"! Thank for the good wishes too @Kareno62 and @charly. I also met and chatted with a good few others who were not active forum members.

I agree entirely with you @DMR700 about the patient perspective presentations and the differing opinions of surgeons, oncologists and psychologists too.

We were talking of an Edinburgh meet Charly if you’d like that? Shall we think perhaps think about a possible date in March? Is there a particular day of week that is more suitable? I’m happy with any day (working around chemo) we could do lunch?

All very welcome of course!

Lots of love to you all,

Karen ????❤️

P.s. Great to get home and watch Scotland win the Calcutta cup at Murrayfiefd too!

Ally13

@Baxter2 Yes, it was good to meet everyone and put a face to he names! Lunch in Edinburgh would be fine. I do have a couple of medical appointments in March, but will work round what suits everyone else.
Enjoyed the day, with some useful information, but agree with @DMR700 (sorry didn’t get chance to chat), that patient perspectives were similar, and both stage 2. Survival stories of stage 3 and 4 would have been very helpful. We’re aiming to beat the odds! :x::x:

charly

Hi there @Baxter2, meeting in Edinburgh sounds like a great idea - I am back at work part time and still on chemo so working around that, but have wednesdays free on the weeks I’m not picking up meds at the hospital and some Fridays - how about Friday 9th or 23rd or Wednesday 7th or 21st? If those dates don’t work for others just please just say as ther may be room for manoeuvre!
Yes I enjoyed the rugby too!
So sorry to miss the day but forward to meeting some of you soon. ?
Charlotte :x::x::x:

Baxter2

Great @charly! I’m just about to start a new thread to try And arrange a day in edinburgh. I was thinking possibly Friday 30th or Sat 31st March? (It’s the Easter weekend so may or may not work for others.

K????❤️

mem

Was so lovely to meet you all yesterday and I really enjoyed the day, especially the tablet ?! Thankyou to BeatingBowel Cancer and Bowel Cancer Uk for organising.
I also agree that there didn’t seem to be a great deal of discussion/information in relation to stage 4 cancer. I can appreciate it was a very full day but it may worth considering, for future patient days, a patient and-or relatives view about living and dealing with stage 4 cancer?

Here is a picture from yesterday and I’m really sorry I didn’t get the chance to meet and talk with you @DRM700.

From left to right: Me, @Alan C, @Ally13, @Baxter and @Highkaren ☺️ xx

Baxter2

Thanks for posting the pics @mem! Loved meeting you all but we could have used a few more hours of chatting time!

Kxxxxxx

GD62

Yes I agree that the speakers looked a bit low risk screening type topics, a bit late in the day for some of us. I mean something like @Bridget55 story was good technically and personally would have been good. Cheers :x:

Alan C

Dear @mem, @Baxter2, @Ally13, @Highkaren brilliant meeting such a lovely bunch and also your lovely other halves. Thank you to Beating Bowel Cancer and Bowel Cancer UK for organising the day and making it possible.

I agree it was geared to people more at the start of a cancer journey, I would like to see a healthy input regarding those of us on a palliative pathway, but I suppose it's quite a broad subject.

@DRM700 apologies I didn't have chance to speak with you only saw you in the distance whilst adjusting my make up for the group photo! I wish you and your family all the very best for the future. :):D;)

Baxter2

Yes I agree @GD1962 and your story too!

K????❤️

Highkaren

i echo the sentiments ... not enough or any focus on stage 4s which we all know bring a different set of considerations and mindset and in addition there was little emphasis on younger people .
Also would like to see some break out sessions, a full day of presentations doesn't allow networking with the patients and i think there is a richness in sharing experiences with other patients.
Overall though a good day and a great opportunity to meet with @mem @Ally13 @GD1962 @Alan C .

GD62

Hi @Baxter2 and @Highkaren

On a lighter note have finally booked a week in Venice for June 2nd and looking at another little break before the CT scan in July. I had forgotten about such 'normalising' activities and will enjoy them even more.

Take care all :x::x::x:

DMR700

@Highkaren YES! More breakout sessions. I personally got more from the brief chats with you and @Baxter2 than I did from many of the presentations but felt we had to rush :x::x:

DMR700

Also it was great to meet Deborah who was lovely and gave me some food for thought. Many of the professionals are so matter of fact, it’s nice to be seen as a person rather than a case number...!

Bridget55
Quote from @GD1962:
Yes I agree that the speakers looked a bit low risk screening type topics, a bit late in the day for some of us. I mean something like @Bridget55 story was good technically and personally would have been good. Cheers

Thanks for the vote of confidence Gerry and glad this has helped other people which is my main aim. Hope you are doing well. I'm currently in Valetta Malta !

GD62

Hi @Bridget55 , O how wonderful to be in Valetta, Malta a beautiful island, and have booked a holiday in Venice for three days and Lake Garda for June. Glad you are enjoying life and keep it up....:D :x::x::x:

Sarah Staff (Support and Information)

It was lovely to meet some of you at the Patient Day last Saturday and thank you for your valid comments. We will be evaluating the day, so your feedback is so welcome! Best wishes Sarah