The Curly Sue page is actually updated by Andy, Curlys husband, but this is what Susan wrote at the commencement of our BT Buddieship.
Hello, I’m Susan, also known as ‘Curly Sue’
Andy and I met when were 15, married at 18 and had our first daughter, Joanne at 21. We lived in the North East of England. Moved to Carlisle , Cumbria in 1979 and Rebecca was born in 1982. We have lived in Carlisle ever since. The girls are married and we have two great son in laws and between them we have three adorable grandchildren.
Andy and I had a dream, to own a boat and sail the Greek Waters. In 2009 we bought the boat and renamed her Curly Sue after me and my mop of curly hair. In 2010 we sailed her to Greece from England, our epic voyage then bobbed around the Greek Ionian seas in 2011 meeting new friends and having a wonderful time. Missing the family was the only downside.
So in one way I feel very lucky. All our friends were pleased for us as we were’ living the dream’.
However the dream is now a bit of a nightmere.
We came home from Greece for Christmas 2011. I was feeling fine., I had lost some weight as I was diagnosed with Type 2 Diabetes in March 2011, so not only did I feel well, I looked well too.
Christmas came and went, and if I was honest, it was a little stressful being back home. Headaches started, which I never usually get. Painkillers just didn’t budge it. I woke with a bad head and I ended the day with a bad head. Then, as daft as it sounds, I forgot things. I never switched the lights off! I couldn’t multitask!!! - something all women take pride in! the headaches just got worse, and became debilitating. I felt I was living in a bubble. Both daughters and my husband became very concerned, so off we went to the doctors. I was convinced that I had Dementia as my father suffered this.
10.1.12 saw nurse at GP practice re headaches - painkillers prescribed, told to see a doctor
12.1.12 Saw doctor who listened to all our concerns
16.1.12 Off to see family in Derby. Headaches so bad I couldn’t function/talk. Cut the trip short.
18.1.12 saw GP again. Andy asked if I could have a CT scan. The GP was great and organised for us to go to the local hospital where we met an old GP, of mine (a friendly face) who sorted out the CT scan. By teatime it was confirmed that I had a brain tumour. We were devastated and Shell-shocked. I stayed in hospital for a few days and was given steroids to take away the swelling and reduce the pressure. It was bliss when the headache eased and I felt so much better.
25.1.12 Hospital appointment. RVI Newcastle Neuro surgeon He explained that he intended to remove the tumour.
30.1.12 Surgery, Tumour removed. I was amazed at how quick the recovery was. I was sitting up having soup and ice cream when the family came through to see me! The RVI were wonderful.
1.2.12 Told I could go home!!! scary thought, but brilliant. Andy came to collect me. He has been great and a first class nursemaid.
I lay in bed with only negative thoughts, thinking of goals to aim for. I want to move. Our daughter is moving out of town and I would love to be in the countryside. So I asked her if I could have a granny Annex. She said yes and now that is all I think about and get very excited about. I can see us living there, playing with my grandchildren in the garden. I even have a vision of my next years Christmas decorations in the new place!!!
Then we just had to wait for the next appointment regarding the biopsy result.
8.2.12 Appointment at RVI with the consultant BAD BAD NEWS DAY. Told I had GBM IV which isn’t curable and if I had anything big planned for 2014 I should bring it forward. We were all devastated. The journey home was silent.
Told the girls it was ok to be open and free to cry and have down days - but also told them to have positive thinking days as I was determined to beat the statistics. Nothing was going to deprive me of seeing my three grandchildren grow into teenagers.
10.2.12 discovered BT Buddies - A lifeline - thank you - so inspirational.
As the days have passed, I am feeling a lot better - no headaches, so it’s bliss as I am functioning ‘normally’, but the waiting to see the oncologist is purgatory - I just want to get on and beat this.
We wake every day and say this is the first day of the rest of our life. What shall we do today. We keep the days busy. We have booked a concert or two for April and we are going back to Derby to take up where we left off last time.
Just waiting for the oncologist to get in touch….
I am ready to do battle - let it commence.
20/09/12 Still fighting........