This is the contribution from a loving daughter, who looked after her Mum. This was written to help other family members or patients to prepare themselves when it is established that nothing else can be done – or if a patient has decided they do not wish to undergo any further treatment.
It is written in a loving, positive way – and we sincerely hope it may help some families affected by MDS.
A RELATIVES PERSPECTIVE OF MDSwebPDF
“When one person in the family has cancer, the whole family are affected by the diagnosis and Myelodysplastic Syndrome (“MDS”) can be a particularly challenging illness to treat and live with.
My advice to families who find themselves in this situation, is to be open and honest from the start. You must accept the fact that your lives will go on hold, but sharing your fears and frustrations will bring you closer than you could have ever imagined. And it is this closeness that will guide you through the toughest of days and give you the strength to go on fighting.
My mum was an active, fiercely independent woman but with a particularly rare and severe type of MDS I had to witness her simply waste away in a matter of months. I miss my mum deeply and contrary to what people might think or say, time, nor faith will ever fill the void I feel in my heart. “