Those of you who know me well will know that I tend to be direct and fully express myself. I’m assertive, I speak my mind and do not suffer fools gladly, much to the dismay of more timid folk. For this quality, I have been shunned by some or at least kept at a safe distance. Other people though find it exhilarating, honest and admirable – thank goodness! One of these friends even calls me a ‘gobby cow’… in appreciative tones. Honestly!
I’ve been called argumentative, but I don’t think I am. I actually don’t like arguments at all, but I do enjoy a good discussion, sharing and building upon each other’s ideas. I come from a long tradition of Jewish debate… “In traditional Jewish books of learning the concepts of beginning and end do not exist. It is all about the middle – about the dialogues, the discourse, the exchange of ideas”. I’m curious, I question things, I want to understand – if possible, both sides of an issue – and I persevere when others tire. I am so misunderstood. LOL!
With all this, some might say I have a big mouth… but what’s going on right now with my mouth is not big and it’s not clever. I had two short bouts of oral thrush (a fungal infection, not GvHD), which were treated successfully. But since then my mouth has become sore, dry, ulcerated and so tight, that it feels much smaller. We suspect it is the first sign of Graft versus Host Disease [GvHD].
The main areas of discomfort are at the top and bottom of my gums, on the outer side where the gums meet the inside of my lips, but I also regularly get odd single ulcers appearing on the roof and sides of my mouth. My whole mouth feels tight, so a wide smile or yawn hurts. When I eat, I can’t open my mouth as fully as normal, so I take smaller bites and therefore eat more slowly. If I accidentally knock my lips with the fork, it hurts. And because the space is tighter, after I’ve eaten I have to very gently pass a finger round my gums to move any bits of food that have become caught there. Very attractive! If I do it too forcefully or too rushed, it hurts. I can’t do it with my tongue because it hurts and can’t quite reach the space without stretching my mouth, which hurts.
My lips and mouth are very sensitive, similar to having burnt your mouth. Hot food or drink is too painful, so I have to blow on it and wait for it to cool down to tepid before my mouth can cope with it. With the blowing, waiting and small bites, the whole eating/drinking process takes time. While others have already supped theirs, I’m still waiting for it to be an acceptable temperature, or tenderly nibbling. And by the time I finish, it’s usually cold.
There are some foods that I find particularly difficult – anything too dry, like bread, biscuits or cake. Sometimes my sweet tooth takes over though and I try a Danish pastry or a chocolate hobnob, but the experience is not fully pleasurable and it takes even longer to eat, as I have to keep stopping for water or to allow my mouth to recover.
Other tastes that are hard to handle are too much vinegar, salt or scratchy foods like crisps. Additionally, while I’m okay with the warm spices, I cannot tolerate chilli at all. The slightest hint of chilli in food sets my mouth on fire.
After eating or drinking anything at all irritating – hot, dry, crunchy, sour – I find myself dabbing gently at my lips to soothe them and wipe away the feeling that I’m dribbling or that I have food left on my lips, neither of which is usually the case, but it feels like that.
Mint toothpaste also stings, but fortunately the stinging passes quite quickly. In terms of dental care, I trust the major toothpaste brands more than those found in health shops. But there are some days when I really can’t face the stinging and I resort to the much more gentle experience of fennel toothpaste.
My dental hygienist has spent quite some time training me to floss to avoid gum disease. It’s not an activity that I enjoy, but nor is tooth extraction… So over the last few years, I’ve got into the habit of flossing daily. I’ve had some time off when going through some of the myeloma treatment. With a compromised immune system, I know I have to be more careful these days about any kinds of infection. But with my mouth this sore, just thinking of flossing makes me cringe. So, I’ve come to a compromise of flossing every few days when I can bear it. So far, I think it’s working – no bleeding.
You might ask, what are the doctors doing about it? The first suggestion was soluble Prednisone (a steroid) as a mouthwash and gargle. Without swallowing, this seemed quite a safe bet, as it wouldn’t be absorbed into my system. I gave it a good try – twice a day for a couple of months, but it hasn’t worked.
Then they offered me Tacrolimus paste, which the pharmacy had to make up specially. I took it home in its plain white tube and with a renewed sense of optimism went to apply it to the inside of my lip. The paste itself is an unappealing dingy brown colour and it’s grainy, like crystallised jam. Nonetheless, I applied it to the inside of my lower lip. OMG! It’s horrid! I almost gagged. It felt and tasted disgusting, making my mouth feel like I had stuffed grubby tissue paper inside, like a thick unpalatable coating. I had to remove it immediately, which was quite a feat in itself, as it wanted to cling to my mouth, which I suppose is what it’s supposed to do. Bleugh!
I have since checked out Tacrolimus on Wikipedia and found that it is another immune suppressant, similar to and more potent than Ciclosporin. So I’m guessing that even if I could tolerate using it and it worked on the oral GvHD, I might get oral thrush again due to reduced immunity. Here I go balancing on that ball again.
I will raise my sore mouth again with the consultant on Thursday when I’m back in clinic. Maybe they can come up with something else that is not too unpleasant. If not, I reckon I’ll just put up with it. To be honest, given what could occur in terms of GvHD, if this is the worst it gets, it would be quite tolerable. And it hasn’t yet stopped me from speaking my mind… so watch out, here comes the gobby cow!