I have Grade 1 Graft versus Host Disease; this means it is relatively mild. Grade 4 can be fatal. When I read about the symptoms I noticed one was “dry mouth” which is what I have. On paper these words seem very mild and it is certainly not a painful condition. In certain circumstances it could be almost comical. I have no saliva so more than a few minutes without water or another drink means my mouth becomes impossibly dry and my lips curl back on my teeth which so that it is difficult to drink without spilling the liquid. I really must look a sight like that so my constant companion is a bottle of water.
The irony in all this is that we live in an area with lots of fruit farms and farm shops with pick-your-own strawberries. When you have a dry mouth you crave juicy foods such as strawberries, mangoes, melon and raspberries, all in abundance now it is summer. Unfortunately, I can’t eat any of those in their raw state. Post transplant patients have to avoid raw fruit and vegetables which in summer also means no salad.
No saliva means having meals with plenty of sauce. A sandwich is too dry and cake is impossible. It will be a long time before I have any nuts or crisps. I can live without the latter but fruit is something I really do miss. We have another problem if we are out all day at the Marsden as it is natural to go to the café for a sandwich for lunch but this is impossible so mostly I go without.
Dry mouth is an inconvenience but I am sure it will go away eventually but it is symptomatic of a lot of the problems which cancer patients have. We tend to focus on the main ones, quite naturally, particularly where they involve pain but most cancer patients you will encounter have a host of other problems. If you see someone with their lips curling back on their teeth it could be me or another post transplant patient.