For our community members based in Scotland, you may remember our Aberdeen and North Scotland Support Group than ran for almost 15 years up until the Covid pandemic, where it unfortunately was put on hold. We’re excited to announce that this group will now be restarting, thanks to a brilliant new volunteer who is taking on the role of group leader.
In this blog post we hear from Caren, a volunteer who has set up our new Aberdeen Local Support Group. She shares how her experience of Cushing’s disease led her to seek out support in her local area and eventually take on a group leader role.
Caren’s story…
After years of being told there was nothing wrong with me and I just needed to stop eating so much, I was finally diagnosed with Cushing’s disease in December 2007 and had surgery in April 2008. Having been on so many different diets for many years, I began to lose weight without even trying and by 2012, I was slimmer than I had been for years, size 10 – a miracle!
I didn’t really know anyone else with a pituitary condition and just took advice from my wonderful endocrine consultant, Dr Carroll and specialist nurse, Louise Breen.
At that point I moved to Scotland, but opted to stay with my London team. I knew them well and trusted them to listen to me.
On a routine appointment, I voiced my concerns about my weight being on the increase again. Although a second tumour was rare, I just knew it was back. I was taken into hospital for a week of tests which did confirm a new tumour. My operation was booked for the 1st of March, but 2 weeks before surgery, the registrar telephoned to say they were cancelling the operation due to high blood pressure. I contacted my GP, who was fantastic and immediately supported the lowering of my blood pressure with meds. I cancelled my sick leave and tried to focus on lowering my blood pressure. On the 28th February I received a telephone call to say my operation would take place at 9am the following morning! It was March 1st in 2018 the Beast from the East was in full flow, Scotland was cut off from England by road, there were no trains running but my wonderful husband managed to get me a seat on the last available flight out of Aberdeen to London (many were cancelled) ready for my next operation.
Due to the snow, my family were unable to come with me, so saying goodbye was very emotional. I arrived at Kings College Hospital at 00:45, stressed and also relieved! At which point, I said “Do not tell me my blood pressure is too high to operate” I managed a few hours sleep and was then told I needed an MRI before surgery.
Finally, I arrived in the pre-theatre room, to be told the surgeon was running late due to a car crash in the ice. You may be asking “How was your blood pressure?’ – not great! There was much discussion about maybe not admitting how high it was. The anaesthetist came to see me and said whilst it was not ideal, given the circumstances, he would assure the surgeon all was ok.
After surgery, I really thought I knew what to expect, how wrong could I be!
The result is the tumour could not all be removed, so radiotherapy daily for 6 weeks (locally) and now I am on many replacement therapies. It was whilst having radiotherapy that it was suggested I get some support. Initially was referred to Maggies in Aberdeen, such lovely people and despite it being mainly for cancer patients, I was welcomed with open arms and made some lifelong friends.
It was this that inspired me to look for a Pituitary Foundation Local Support Group. I was incredibly lucky finding the North East Scotland Group. What a difference it made to speak to people who understand what you are going through!
Sadly Rita, our group co-ordinator, had to step down and I was rather nervous about taking on too much as I currently work full time and as you all know, we have and maybe always will have our good and bad days. Time went by and a few of us got together for an informal coffee and lunch. Through our general chat, I asked what the group would think if I re-opened an Aberdeen group.
We are holding our first official group meeting on Saturday 13th September at 10.30am and look forward to welcoming friends and hopefully put together a calendar of events for everyone to look forward to.
Interested in joining the new Aberdeen & North Scotland group?
If you would like to join this new support group, you can see all upcoming meetings and register your place below.
Join the group!