3rd blog post in 4 days?  Its obvious who's bored isn't it!

I'll apologise in advance because this post is going to be quite educational in places and I know most of you read this blog to be informed - not educated!

Following another sleepless night we contacted the hospital yet again (I hope they don't think I'm a pain) and were told that my oncologist Bernie was at Doncaster Royal Infirmary this afternoon - but (as is usual with their helpful nature) I was more than welcome to attend the clinic there.

I agreed and thanks to sister Lou for chauffeuring duties today.

The morphine dose I had been prescribed really wasn't touching the pain last week, so I read the leaflet that came with the bottle and re-prescribed myself an increased dosage in line with the instructions.  This again didn't seem to be working and so I started taking the morphine in conjunction with Solpadeine - a very strong soluble pain relief that can be taken through the peg.  Frustratingly - nothing seems overly effective at reducing the pain of the oral thrush.

And following todays appointment with Bernie (where she put a camera up my nose again 'to have a good look at the throat from the inside') its becoming clear why nothing is working on the oral thrush.  Its because I don't have oral thrush. At all.  It is mucositis after all.  And I have a lot of it.

People who don't like graphic descriptions should perhaps stop reading now.

OK, this is the educational bit.  The mucositis has basically attacked my tongue, inner cheeks and throat and is a common side-effect of radiation therapy in head and neck cancers.  What it has done is  stripped the lining of the soft membranes in my mouth, leaving the red flesh and nerve endings that are underneath exposed.  Which would explain why drinking even water is so painful.

This is an extract from Wikipedia about Mucositis.  Clicking on any of the red 'links' will take you to the Wikipedia page for more info.

 Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer.

As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. The ulcers may become covered by a yellowish white fibrin clot called a pseudomembrane. Peripheral erythema is usually present. Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful. The degree of pain is usually related to the extent of the tissue damage. Pain is often described as a burning sensation accompanied by reddening. Due to pain, the patient may experience trouble speaking, eating, or even opening the mouth.

Diagnosis is based on the symptoms the patient is experiencing and the appearance of the tissues of the mouth following chemotherapy, bone marrow transplants or radiotherapy. Red burn-like sores or ulcers throughout the mouth is enough to diagnose mucositis.

Treatment of mucositis is mainly supportive. Oral hygiene is the mainstay of treatment; patients are encouraged to clean their mouth every four hours and at bedtime, more often if the mucositis becomes worse. Water-soluble jellies can be used to lubricate the mouth. Salt mouthwash can soothe the pain and keep food particles clear so as to avoid infection. Patients are also encouraged to drink plenty of liquids, at least three liters a day, and avoid alcohol. Citrus fruits, alcohol, and foods that are hot are all known to aggravate mucositis lesions. Medicinal mouthwashes may be used such as Chlorhexidine gluconate and viscous Lidocain for relief of pain.

 And so endeth the lesson.

It was suggested that in order to increase my drinking of liquids it is important to get the pain under control.  I now have to take my morphine every 2 hours, not 4.  I also have to maintain the Solpadeine - though stick to every 4 hours with that.  I have a range of mouthwashes too.  One thing that wasn't prescribed was Corsodyl mouthwash - but I've just had a rinse with that as I was in the bathroom anyway (after diluting it with water - all of the mouthwashes are far too sharp without dilution) and that has relieved the pain quite a bit - briefly yes but its a start.

After the appointment I was introduced to the Speech and Language therapist Sam, who was lovely.  She was so understanding and I have a follow up appointment with her in 3 weeks, when hopefully the tongue won't be as sore and we can start working on some exercises for the tongue, throat, neck and mouth.  (Not THOSE kind of exercises - I just know where some of your minds would be going with that)

I have to do these to regain full movement - as you can imagine with the pain on my tongue I am starting to speak with minimal use of the tongue and this is making me sound quite strange.

So I've had a quiet evening in tonight in front of the Germany-Austria game, talking to nobody as Sarah has been in Sheffield watching The Wedding Singer at the Lyceum.  I hope whoever got my ticket for this really enjoyed it.

I've just realised I've already typed far more than I'd planned and with 3 posts in 4 days I'd hate to get accused of boring you all - so with that in mind I will bid you 'Good night' and promise you - no more blog posts until things change - significantly!

Thanks for stopping by

Nigel xx

PS:  This is quite an important PS.  Can I apologise to people close to me at the moment - you all know who you are.  I know I'm being very grumpy at the moment, and I know that as the people nearest to me you probably are on the sharp end of my tongue more than any of you deserve at the moment.    I'm really genuinely very sorry.  I start each day consciously thinking 'I will be more tolerant today'.  At the moment I seem to break that promise before 9am on each day.  Its not personal (at all) its entirely down to pain and frustration and none of you deserve it.  And I don't deserve the way you all manage to bite your own tongues (I will stop talking about tongues in a minute!) and not shout back at me.  Well, some of you don't!

Please, if I'm being grumpy or short - tell me.  Sorry again.  Love you all.