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Horrid mouth ulcers
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May 5th, 2010I am back at home. Sorry for the late update. I wrote for my blog on Friday at the hospital, please check that as well.
Well, I managed to get out of Homerton hospital on Monday afternoon. I could not have been any happier. I was beginning to start losing the will to live in that hospital. One of the first things I noticed when I was at home, how quiet it was. Hospitals are so noisy, and you simply do not get any rest there. Which is ridiculous, as when you are poorly, that is when you need the rest the most! I felt incredibly tired, physically and emotionally when I got home.
I went to the Royal Marsden yesterday to be reviewed. My bloods were good. The kidneys had fully recovered. However, my mouth is FULL of PAINFUL ulcers, so they did not go ahead with the chemo. Even though I hate delaying my treatment, I was pleased as I felt I could not take the treatment yesterday. I felt I was not fully recovered, yet. I was given medication for my mouth.
I was still quite traumatised by the Homerton experience yesterday, and kept bursting into tears whenever anyone asked me how I was. The staff at the medical day unit are so lovely, a total opposite to the staff at the homerton. I was overwhelmed by the kindness I received yesterday after how I had been treated in Homerton. The sister in the unit was particularly amazing. She was on her way to have her lunch, but when she saw me, probably looking quite different from the bright and bubbly person that I normally am, she came and sat down to talk to me. The unit was extremely busy yesterday, but that did not stop her to spend proper time with me and to listen to me, and comfort me. She decided to order me a taxi home on the department budget. In the end, I was crying just because she was so kind, and had made such a massive difference to how was feeling.
I am at home, catching up with some sleep, and trying to fix this mouth of mine. I am in a lot of pain, which is constant. I had to opt for tramadol, as paracetamol alone did not seem to make a significant difference. Eating and drinking is extremely difficult, but I have been trying. I can mostly only tolerate cold smoothies, which I drink with a straw trying to bypass the mouth as much as possible. I have lost 2kg of weight already. I really cannot wait to have my mouth back to normal!
4 Responses to “Horrid mouth ulcers”
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Monique
Thank you for posting the updates, Piia. I am sorry to hear you are feeling so poorly on this current regimen. The mouth ulcers sound really painful and annoying. Not getting the care you want at Homerton can’t be helping your stress levels. Thinking of you here Down Under.
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Piia
Thank you Monique! The ulcers are incredibly painful. My eyes are watering constantly because of the pain. This is probably the worse pain I have had since the diagnosis.
The care in Homerton is such poor standard. I am thinking of writing to them about my experience there. I was stressing out all the time about getting the care that I desperately needed, and was not getting. For instance, I had a pretty bad acute renal failure and needed constant IV fluids. Sometimes, i would be without the fluids for 6-8 hours as the staff had not changed the bag even though how many times I had reminded them. So bad.
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Monique
Here is Australia you would complain to the hospital and if you are not satisfied with the action taken you can take the matter further by contacting an ombudsman. As you have had problems with this hospital on an ongoing basis which is adding to your stress levels, I would take it further. Do everything in writing.
From http://www.nhs.uk
Since April 2009, the NHS has run a simple complaints process, which has two stages.
1. Ask your hospital or trust for a copy of its complaints procedure, which will explain how to proceed. Your first step will normally be to raise the matter (in writing or by speaking to them) with the practitioner, e.g. the nurse or doctor concerned, or with their organisation, which will have a complaints manager. This is called local resolution, and most cases are resolved at this stage.
2. If you’re still unhappy, you can refer the matter to the Parliamentary and Health Service Ombudsman, who is independent of the NHS and government. Call 0345 015 4033 -
I have had lot of those ulcers in my years, changed toothpaste finally sorted it out after a decade. Used to have lemons and oranges as first resort with little help on them. Toothpaste is called Elmex here, which have helped ALOT of people on the ulcer matter.
