BC Becky

Never thought I'd want to be a breast cancer survivor

Tag: mouth sores

  • Not talking = not blogging

    I’m amused that over the last few days it has been extremely difficult for me to talk, and somehow that has resulted in me not blogging.

    I find myself wondering if it is because I cannot even talk to myself! But then, I usually write in my head.

    Truthfully, it is probably because I haven’t done much over the last few days but watch TV and sleep, so I don’t really have much to write about (or talk about).

    My mouth sores got bad enough for me to ask for stronger drugs.  I have been taking liquid morphine for the last couple of days – originally every 2-3 hours, but now I’ve backed off a bit. I slept through most of last night, which has gone a long way to helping me heal. Prior to that I was waking up hourly (or after morphine every 3-hours) with sharp mouth pain. The sore on the back of my mouth where the bottom of my tongue attaches is the worst. Simple things like eating, talking, even licking my lips are not possible – and the difficulty in clearing food from my mouth and brushing my teeth! So many everyday things we do with our mouths.

    But, it is getting better. I no longer feel like my tongue is too big for my mouth – it fits again. The roof of my mouth is still rough, but no longer feels like super scratchy sandpaper – more like the fine grained black sandpaper.

    I have a whole new empathy for those who have had severe side effects with chemo. I can appreciate so much more how people find exercise to be a challenge (having not done any since Tuesday).

    My excuse for not exercising has been an inability to hydrate enough. On Tuesday I rode my bike out to my eye doctor appointment, and I struggled with the heat and inability to suck water from my water bottle.  The food I had brought with me to help keep up my energy stung when I tried to eat it. In addition to pain from motion, I found that I could not eat anything that was the slightest bit acidic or salty. Fortunately, after the appointment Scott could pick me up afterwards and take me home.

    Today I’m going to go to support group, knowing that few people are apt to be there on the long weekend, and I cannot really talk. It will be nice (assuming it is even open) to see familiar faces and just be in the space with people.

    We had originally planned to go on a bit of a bike adventure on Sunday – taking the train to downtown San Francisco and riding towards home – however, that microadventure plan is now on hold. We may try it in a couple of weeks if the new chemo regime doesn’t take too much out of me (it is supposed to be easier, but the first couple of weeks might be difficult). Instead, tomorrow we will venture out to the coast for a walk on the beach. It has been a while since I’ve been out to see the ocean (rather than the Bay, which we see almost daily). I look forward to the smells and the sound of the rolling and crashing waves.

  • Feeling my nadir today

    For the last couple of rounds of AC, I’ve actually felt quite strong on my nadir day (day of lowest blood counts). Today, I’m tired.

    My biggest struggle today is mouth sores. On the weekend I started to develop mouth sores (the ones on the underside of the tongue are especially painful) and along with it thrush. I’ve now started treatment for the thrush, so my mouth isn’t as full of gunk, but boy do the sores ever hurt! I’m on a pretty much liquid diet, as solid foods get stuck under my tongue and in the back of my cheeks, and I cannot move my tongue well enough to clear it out. I also cannot easily open my mouth wide enough to do a decent job brushing my teeth (plus with low platelets, I need to be really careful with teeth brushing as my gums bleed).

    It all sounds rather awful, and feels that way too, but in the grand scheme of things is it more an annoyance that a real problem. I will need to run out to Costco later today (after the plumber comes to look at the toilets) to buy more ice cream. The coolness and non-acidity of ice cream actually relieves a lot of the pain in the mouth and ensure I get in some calories – however, they are not enough nor the right calories for exercise.

    I biked to an ophthalmologist appointment yesterday – but that proved to take too much out of me. Biking in the sun, without adequate hydration and an inability to suck on the water bottle (and pain when opening mouth wide enough to get the water bottle nub in my mouth) meant that I was exhausted by the time I arrived (about a 40 minute bike ride). So until I am able to eat solid food (even soft solid food) and hydrate adequately, biking is out. Today is officially an exercise rest day. Tomorrow I’m allowed to get back into the pool, so if I don’t have the energy to bike (cause I’m not eating the right foods today), I can at least do a gentle swim.

    I’m looking forward to the rebound!

  • Mouth sores & First cycle symptoms

    For the last few days I’ve been discovering what chemo mouth sores feel like. Earlier I had a few canker sores. I usually get them when my iron is low, which also happens with chemo, so I was supplementing iron which mostly kept the cankers to a minimum. Then I got a true chemo mouth sore. It is nothing like a canker sore. It formed on the side of my tongue, which apparently is particularly sensitive (ouch).

    There are many mouth wash recipes on the Internet, so I asked Scott to find one and make me a mouth wash from a recipe for treating mucositis (he made it in a small nalgene bottle for me):

    • 14 oz of warm water
    • 1 Tablespoon Baking Soda
    • 1/4 Teaspoon Salt

    It seems to be working. I used it last night and this morning (and after anytime I eat) and the sores are starting to get better. I now know why the doctors ask “can you eat”, as the concern isn’t the sore itself (that is a chemo side effect, and it will eventually heal), their concern is that you are eating enough so that you stay healthy overall. Fortunately, among the odd prescriptions I got from emergency (even the dermatologist was confused by this one) was a bottle of oral viscus lidocaine (like the dentist uses before putting in a needle), which is used to help provide symptomatic relief of the mouth sores to allow you to eat. So, for this one, I was prepared in advance.

    I’ve created a little chart for my oncologist (and myself to allow for planning next cycle) of my various chemo symptoms in the first cycle (if you think something similar would be useful for yourself, send me an email and I’ll send you the template – it is done in Powerpoint). I will use it when I next see the oncologist to get him to write in the preventative section at the bottom information about when I should not swim, and any other activities I should be limiting at various times, as well as when I can and cannot take NSAIDs. I’m finding that I need the visualization to better understand things – and I want to make sure that I’m not being too cautious about swimming, as it is something that I need for my mental health – especially if biking may involve blistering.

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