Okay, now I know what all the fuss is about. In the middle of the night, my mouth just deteriorated rapidly. Very sore to swallow and a continual pain. It looks like most of skin in my mouth has been removed due to the effects of the conditioning chemotherapy, radiotherapy and the methotrexate injections. This condition will worsen until my new stem cells have engrafted. This usually happens around Day + 21. So this will get worse (or get no better) for a couple of weeks- during which time all my hair will fall out and my blood counts will bottom out. So an important job at the moment is PAIN MANAGEMENT, FEEDING and BLOOD TRANSFUSIONS.
Pain Management: At the moment I have Paracetomol, a couple of pain-killing mouthwashes (Difflam & Lignocaine) and Dimorphine, which I will probably start tomorrow.
Feeding: I will probably start using the nose tube very soon as it is getting increasingly difficult to swallow. It will probably be liquid, as the only food that could make it through are individual strands of spaghetti.
Blood Transfusions: Once my platelets drop below 10, I will get transfusions. The Haemoglobin level will probably drop later and I will get red blood cell transfusions to tide me over until I start producing my own. Did I mention how important donating blood is? 😉
Am still in good spirits and coping fine. However these are quite challenging times and I am just focusing on knocking off each day at a time and patiently inching towards the magic day when things start to turn around. I refuse to be depressed or sorry for myself; I am too grateful to have made it to remission and to have matched my sister for any of that.
Tomorrow, my good friend and fellow patient Tim Stollery is having an operation to cut out any remaining cancer. Please visit his site for updates and sign his guestbook.
Okay peeps, thanks so much for your messages and to my brother-in-law Martin May for ‘presenting’ me at his school’s assembly. Hence the plethora of messages from Welsh schoolkids!
Have a good one! Milt
