Sarah became a member of the brainstrust community after being diagnosed with a GBM and is a regular and valued attendee of our virtual meetups. Sarah navigates life with her partner, Adrian, who is living with a Meningioma diagnosis. The two of them have adapted to the impact of both their diagnoses with as much positivity and good humour as they can muster in light of the restrictions they face. Here is Sarah’s account of her life with a brain tumour.
The support of family and friends
Since Adrian’s operation for his brain tumour in November we have been immensely touched by the lengths to which our friends have gone to, to both help in Adrian’s recovery, and ensuring that I have been supported. My family have also been a huge support during these times even though large distances have made this a challenge. My sister lives in Germany with her family and my parents are nearly 200 miles away.
Thankfully Adrian’s brain tumour was benign. We are recovering from the shock and the ridiculous odds of lighting striking twice.
Adapting to living without a car
Having no driving license between the two of us has cramped our style but we still find low-cost alternatives. Whether that is walking come rain or shine or cycling or popping out for a coffee.
For example, we invested in an electric bike so that I could continue my love of the outdoors and cycling, and you will often see us cycling around Windsor Great Park. My 52% sight loss is a challenge but with mirrors attached to the bike and cycling with friends I can still enjoy adventure and seeing noticing new things. I avoid roads whenever possible.
The power of the outdoors
We make the most of what we’ve got, finding the motivation to get outside and into nature is crucial to both of our well-being. We have found opportunities to do cheap craft classes and met very lovely people in small groups who have accommodated our needs to stay clear of Covid. We keep trying new stuff which feeds our spirits.
Adapting and coping
We have learnt not to push the envelope too hard during those good times as experience has taught us that this makes the bad times harder to cope with. Mental and physical fatigue are plights to be dealt with as cleverly as possible.
To quote “The Crowded House” song we often have four seasons in one day in terms of emotional and physical well-being.
Sometimes you just have to hold on tight and hurl yourself through parts of the day.
Finding joy amongst it all
A day that start with a distinct lack of promise can quickly change by finding silliness and light relief and joy in the simplest of things – like having a dance or a giggle or making bad taste jokes about the rubbish bits of this journey, and are great distraction and help us deal with talking about constipation, the mind fog , the faint memory of how your brain used to operate.
Our key message for others in a similar situation: Keep going!!!!!
Support brainstrust this Brain Tumour Awareness Campaign, help us give a voice to the all too often silent impact of a brain tumour by sharing these stories far and wide:
We’re fundraising to help us continue our vital services. Every penny raised throughout the month will help ensure that people have the support they need.