Glasgow based support

Hi MissClarabo welcome to the forum and it sounds like you are trying to best prepare for what is to come and get support for you which is good.  If your mum is ok with it you can sit in with  her when she speaks to the Consultant. The Consultant will not be able to talk with you without your Mums permission so if she didn't want you in with her then she could ask for them to speak to you separately and that's something that can happen. Thought that may not be able to be on that day as clinics will be running I imagine. 

I'm not sure how the services like Macmillan and Maggie's are set out in Glasgow but in many parts of Scotland they are within the hospital campus if that makes sense or somewhere in the actual hospital. I'm sure someone would direct you to these if you ask. As to which one you would need I think you need to go to them and see what you feel about the services and take things from there.  

Hope it all goes well for you and remember we are here for you as well so ask away? xxxx

Thank you so much Gail. I feel so grateful for the words of advice and encouragement I’ve had on this forum already. It means a lot especially when everyone is dealing with their own circumstances. I’m hoping I’ll be able to be a support to others too. 

Hi Missclarabo 

I am a long way from Glasgow but perhaps a bit of my heart is there as my dad is from Blantyre and still have a number of relations in the area.

Looked my Maggie's glasgow - https://www.maggies.org/our-centres/maggies-glasgow/ 

My experience however is with Maggie's Oxford who operate a drop-in service based on feeling at home and drop in as is I understand their normal style. I always come away from our centre feeling much more calm and in control than I was when I went in.

<<hugs>>

Steve

Thank you Steve! Yes I know Blantyre well! In fact I learned to swim in the pool there many years ago! It sounds as tho Maggies will be a warm and welcoming place to visit 

HI Missclarabo

My husband has attended the Beatson over the past couple of years following his stage 4 brain tumour diagnosis. He had 6 weeks of oral chemo/radiotherapy and then 3monthly maintenance scans.

I'm going to be honest- our CNS was less than helpful so my opinion of the place is clouded by our experience but I have heard others say how fantastic they were. The Maggies Centre is behind the Beatson. My husband went there once to meet a friend. There is a MacMillan  area on the first floor but we never visited. He has resisted all offers of help and support throughout.

Parking is a bit of a lottery but if you get stuck, there is a car park at the hotel (Leonardo I think it is called now- used to be The  Pond and is  first right when you turn in off the main road. There is a small charge for parking there but so much less hassle than the main carpark). 

There's a great cafe on the ground floor - good coffee and amazing empire biscuits!

We always entered on the ground floor at the cafe and made our way through the building from there. It's a bit of a rabbit warren but its well signposted.

As for what you should ask- I'd write down all your questions ahead of appointments and take the notes with you. If possible make sure you can attend the appointments with your mum and keep open communication channels with you and her team. There's no such thing as a daft question, If its on your mind then ask it. 

That's where part of our issue lay. Our initial appointments were during Covid (Oct- Nov 2020) and I wasn't allowed in the waiting room at the time with my husband. He would then go through to speak to the CNS and lie and tell her I wasn't there. She believed him so I was excluded from a lot of important discussions. By the time he came back to where I was waiting he'd have forgotten what she said. Beyond frustrating!

Most of our oncologist appointments have been video appointments. That saved the 60 mile round trip to get there  but you don't get to see the scan images on the video appointments. We also never knew which oncologist was going to pop up on the screen each time as in the end we saw 4 different ones. Our last appointment was last week and we are now at the palliative care stage of this rollercoaster ride.

As for scans, they are not always done at the Beatson. They can send you anywhere in the GG&C area - we've been from Greenock to Balloch and three times round Glasgow, including one at the Children's Hospital. 

I've tried to be open and honest but appreciate this might not be what you hoped to hear. Everyone's experience is unique. Everyone's situation is also unique so I hope you and your mum have a more positive experience than we  had.

Sending you both a huge virtual hug and lots of positive energy. Stay strong,

love n hugs

Wee Me xx

 Wee Me 

Thanks so much for sharing your experience- it’s much appreciated. What a challenging time you have had. 
We have found the ward  staff absolutely wonderful but similar experience to you regarding mums CNS. consultant was also quite clinical and matter of fact despite delivering heartbreaking news to us. Also found the parking during the day extremely challenging!! 
My visiting has been mostly evenings so unfortunately yet to be able to use Maggies or Macmillan centre although picked up a few booklets from the Macmillan area which have been useful. 
Mum starts her chemo treatment tomorrow- infusions every 3 weeks. Hoping that gives us more time with minimal side effects. 

i hope your husband’s care minimises any pain and gives him comfort. Sending you my thoughts and appreciation for sharing your journey 

C x

Hope your mum's treatment goes smoothly.

Stay strong. 

love n hugs

Wee Me xx

I sometimes think because the oncologists see cancer all day everyday they sometimes forget the impact it has on others and so end up presenting as really clinical because otherwise the emotions may end up overwhelming them. I well remember when our oncologist said the only choice was chemotherapy but often that is not effective against the type of cancer my wife has. Fortunately for us my wife was on the good side of the statistic.

<<hugs>>

Steve