We are Matthew’s family and we supported him throughout his illness, experiencing with him the full range of emotions and all that living with a brain tumour brings.
There were difficulties including having to travel significant distances for treatment and at some points having to stay away from home. We met many who had to travel much further for treatment. We struggled to find sufficient information and guidance at all stages save for the larger non-specific cancer charities, something that many we met also said.
The most positive thing from our experiences was the many wonderful people we met, clinicians, fellow patients and their families. Sharing knowledge and experiences helped and just talking went someway to easing the hopelessness we often felt.
We met many patients who had the love and support of their families but there were others who were not so fortunate and some who were unable champion their own needs. We learnt that everyone’s experience is different but by sharing we all gained something to help us face the challenge.
Despite his own problems Matthew would often give time and help to fellow brain tumour sufferers of all ages, who were struggling with their illness and had no one else to turn to. Where we could, we too helped those who had a lesser support base than Matthew.
Matthew’s illness showed us how important it is to have
- clear and timely signposts to treatment and support;
- guided support when it is needed;
- people who can act as your advocate when you are not able to do so yourself and;
· the importance of making the most you can of every day.