Category Archives: Mouth and Nausea problems

DO DEPT HEALTH EVER USE NHS THEMSELVES?

English: This is an image of Donald Berwick, w...

Berwick Report another waste of NHS resources

Scratching around for any excuse to justify poor health care, latest imported US guru – Don Berwick (imported at vast expense) –  has come up with a report, saying much the same thing that he said last time he was overpaid to tell us what is wrong with NHS.

He says what everyone else has been saying, from Gerry Robinson, Lord Darzi et al, for past decade.  And yet still the Whitehall Mandarins sign their over more scarce NHS cash to pay for what any junior doctor or nurse could point out for free.

I dread to think what the bean counters will extract from this report.  Yes – money will be found for yet another crack-pot ‘initiative’. which is so silly that it reminds one of the Emperor’s clothes kid’s story.  And by the time the ‘initiative’ is quietly dropped, yet more of our money will have been wasted.

Have just come off the phone after 30 minutes with an A & E Matron, trying to explain to me why my care was so lacking last time I was in there.  This was second waste of hers and my time, over what was a simple case of incompetent admin.  But when will hospitals realise we don’t want apologies AFTER the event – what we want is basic good medical care whilst we are being treated.

Until that day, Whitehall mandarins will desperately scratch around for anyone who can be asked to prepare a “report” that might justify why they don’t have to get off their backsides and get down to old-fashioned work.  But I fear they don’t have the brains to recognise the truth if anyone tells them getting back to basics is what the NHS needs.

But then, taking a taxi down to any hospital and asking patients (when no staff are able to over-hear) what they think needs to be improved – that’s old fashioned.

Want to know what report we have paid for says?  

Dept Health has just issued press release today, saying

“Patients Will Have Confidence In A Safe NHS And Staff Will Be Supported To Make Safe Care The Priority
NHS staff should be supported to learn from mistakes and patients and carers must be put above all else in an attempt to make the NHS a world leader in patient safety, an independent report will say today.
Professor Don Berwick, a renowned international expert in patient safety, was asked by the Prime Minister to carry out the review following publication of the Francis Report into the breakdown of care at Mid Staffordshire Hospitals.
The report, led by Professor Don Berwick, follows five months of intensive work to examine the lessons for NHS patient safety from healthcare and other industrial systems throughout the world.
His four key findings are that:
The quality of patient care, especially patient safety, should be paramount
Patients and carers must be empowered, engaged and heard
Staff should be supported to develop themselves and improve what they do
There should be complete transparency of data to improve care
Recommendations in the report include:

The NHS needs to adopt a culture of learning

IF YOU WANT MORE, GET ON TO DEPT HEALTH.  They obviously have plenty of time to issue statements repeating the obvious.

Anticipatory nausea – and how it can affect you

Heart Candle

A Patient’s Experience

Normally I steer clear of ‘awful experiences’ – because everyone reacts differently.

And for most people cancer treatment is handled fairly well today – it’s just the side effects that can be BXXXXs!

But an email from a friend, who is a patient and a professional worker, made me think.  I asked if she would mind if I posted this, as it seemed to encapsulate the problems that a small percentage of patients suffer – and no-one does much about this

This is not to frighten you, but to show that IF you have heavy nausea symptoms don’t let staff bully you.  You are NOT the only who has these, however much they try and tell you “No-one has had this before”.

Mary’s story  (not her real name)

“I really want to help anyone else in a similar situation.

What you said about drugs to treat side effects of drugs, which are treating side effects of drugs….and so on.. is so true with so many different illnesses .

I am trying to get through some sort of chronic fatigue at present – but am trying to do it with the help of a nutritionist – not NHS – and it’s slow but I think I’m getting stronger – but if I’d been taking a lot of drugs (I take 10mg of a betablocker each day), they would have depleted my immune system; and I need a strong immune system to get over the fatigue! Catch 22!

I have been looking through some literature on anticipatory nausea and vomiting, and just researching ANV again is making me feel nauseous.  Fortunately I didn’t get the vomiting.

I think I got ANV because of the chronological treatment path – I did not have ANV during the first course of chemo, which was 5 weeks 24/7 via a piccline + radiotherapy – felt nauseous but not in an anticipatory way. But then I had surgery to remove the tumour in my colon, plus lymph nodes – the whole thing in hospital was a total nightmare, with all the procedures due to MRSA etc etc – and prolonged! So was in quite an anxious slightly traumatised state when I started the 7 months chemo, and seeing as so far the worst things always seemed to happen to me – I was anticipating the worst with the chemo! So a prime candidate.

It happened pretty much as they state in the articles – about 4 treatments in – and I think I had a total of 30 to go through – weekly.
My hospice nurse who used to visit me suggested I take half a tablet of some kind of sedative before each treatment, but tried it and it just made me feel doped AND nauseous!! Didn’t work!

The nurses in the chemo unit were  very aware of and sympathetic to the condition. They tried different visualisation techniques with me, treating me sometimes outside the chemo unit – in particular there was one nurse who I couldn’t bear around me – so they stopped her giving me the injections – unfortunately she was the senior nurse – I couldn’t even bear to see her which was virtually impossible!

I used to wait outside the chemo unit – take homeopathic travel sickness pills, wear seabands – acupressure wristbands – also had acupuncture and aromatherapy massage at the hospice, used to suck on opal fruits, drink pineapple juice and listen to my MP3. It all helped slightly but as the treatment went on – well – had to ask for reduced dose as couldn’t tolerate the nausea as the drug accumulated – but was this psychological?!

And I couldn’t speak to anyone during the latter part – each time I felt violated and I know my brain and body were doing their damndest to kee the poison out – while I was trying to turn it around in my head that this would rid me of the cancer and was therefore good!

Think maybe the ANV may not have happened if my treatment hadn’t followed such a traumatic 2 months in hospital – I don’t know. Do know it’s a very real thing – knew of someone who had ANV while having chemo for testicular cancer – v. toxic – 2 years later he was working in a shop – his consultant walked in, went over to say hello, the chap turned round…..and promptly threw up!!

So I do think that people who’ve had ANV – as they say in some of the articles, the symptoms last well after treatments finished, and treatment with drugs isn’t successful – it needs to be psychological – I know if I was told I had to have another course of chemo, the ONE thing that’d stop me is ANV, even if they said I’d be fine after – and this is the type of reaction which the medical profession realise is very real to quite a high proportion of patients and needs to be addressed before, during and after treatment.

I fulfil alot of the criteria which make me receptive to ANV! Female, under 50 – just – when I had treatment, suffer from travel sickness ( v. extreme and have had labyrinthitis a couple of times), I react psychosomatically, so again a prime candidate!

Helpful ideas

I read in one article that video games really help – didn’t realise this, although I do use alot of Facebook applications which are basically videogames – Farmville, Pathwords – and they really have helped because I lose myself in them – so that bit works!

And the Candle above?  Another friend used to take candles with her, saying that their calming effect worked wonders.  But again, candles can make others nauseous, so ask first.

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Mouth Ulcers – new product to zap them

Aphthous ulcer in the back of the mouth
Image via Wikipedia

When you get a painful mouth

There is one good thing about having cancer:  as a medical writer you are never short of a subject on which to tryout  something that might be helpful.

Last month a PR company asked me to lunch (well, someone has to go eat it!).  They were launching two new products that came out of the Mentholatum stable, and as I have written about other products in their ‘stable’ (see

http://after-cancer.com/lymphoedema/some-pain-relief-we-can-buy-over-the-counter/

I knew a good lunch wasn’t going to hide a bad product.

So after lunch, the new products went into my bathroom  cupboard, and sure enough it wasn’t long before I was trying out the Algopain-eze RemeSense Dissolvable Mouth Ulcer Patch. A big name for tiny little patches that adhere to the site of the ulcer, and gave me instant relief.

Broken Tooth

One of my drugs was playing up – and it was over Christmas.  a chunk of tooth filling joined the Christmas turkey, and by next morning the crumbling filling was catching inside my mouth, and it was very painful. How on earth drugs can dissolve this strong product I don’t know, but it makes me worry what they are doing to the rest of our insides.

But the moment I struck one of the patches inside the box on top of the ulcer, the relief!

I had to hold the beige side of the patch to the ulcer with my finger for several seconds, and remember not to keep on touching it with my tongue, but apart from that the patch would stay on for two or three hours – sometimes longer – and got me through the time until the dentist was open again and could file off the protruding filling that was making such a mess.

You can buy these in any good chemist, and they cost £9.50 for 7 patches.

The same company also makes Algopain-eze Herpatch, which does the same thing for cold sores.

They cost £4.94 for a box, so might be worthwhile picking up one next time you get your prescriptions – we are right in the middle of the cold sore season.

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Tips for managing Nausea

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Image via CrunchBase

Tips from Lisa Fayed

Lisa Fayed edits a very succesful website as part of the  http://www.About.com  family, and recently had this Guide to handling nausea:

Nausea is one the most common side effects …. and can also be one of the most miserable ones. Although nausea may seem like a harmless side effect of chemotherapy, it can lead to a loss of appetite and in turn,  dehydration, which can be serious.

If you get an attack, here are her Tips

1. Eat small meals throughout the day. It is easier to keep down small amounts of food when you are nauseated than  large amounts, even when you feel really hungry. Wait until the nausea has passed before attempting to eat larger amounts.

2. Do not eat fatty, greasy foods right before or during treatment. Fatty and greasy foods are often difficult to digest in the first place, let alone with bouts of nausea. Plus, another goal is to keep the food you eat down, and greasy foods can often make nausea worse, leading to vomiting.

3. Rest after eating, but do not lay completely flat. Try laying in an upright position or in a recliner. This will aid in digestion.

4. Avoid strong scents or odors. This may mean no cooking in the home for the rest of the family while you are at home. You may want to dine out for some meals to avoid scent or food aversions.

5. Avoid your favorite foods during treatment if you are experiencing nausea. Your body may learn to associate these foods with nausea and vomiting, a condition called a conditioned food aversion. This may make them difficult to eat when you are feeling less nauseous.

(I found I was suddenly sick when faced with my favourite foods – and found she is right).

6. Talk to your doctor or Clinical Nurse specialist about your nausea. Most people need to drink large amounts of fluids a day and if you are vomiting, this is not being achieved.

7. No smoking. Some people continue to smoke during treatment, but this habit can easily upset the stomach, worsening the nausea. If you are having trouble kicking the habit during treatment, talk to your doctor. Several smoking cessation therapies are available to help you in your quest to quit.

9. Drink fluids at room temperature. Cold or warm beverages may increase or trigger nausea in already sensitive stomachs.

And on a personal note, Tonic Water (Schweppes) works for me.  It goes horribly flat very quickly if you buy the large bottles, but you can get it in small ring-pull cans, which make an ideal dose.

www.about.com/cancer

This is part of the New York Times website family.

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Why NHS treats some diseases better than others

When you can’t eat with mouth ulcers

Cynically – I advise friends to have Diabetes – not cancer.

Why?

Last week my GP called me in for a review of my Diabetes (although it is almost impossible to get hold of him for a cancer-related problem).  He spent a long time going through my diabetes history – which was a total waste of time from my point of view, as I am under an excellent Consultant at King’s College Hospital, who had done all the current tests, and managed to reduce my medication – saying that thanks to the exercise I was taking (good side effect of cancer treatment) I may be able to come off this altogether!

WHY THE DIFFERENCE?  Because my doctor gets about 15 times as many QOFs for doing a diabetes review – than he does sorting out my cancer problem.  QOFs are some extra payments surgeries get for handling our cases!

However, I though I had avoided the dreaded Cancer Chemo mouth – until a new drug set this off . Ulcers made it painful to eat, and I searched desperately for something to relieve the pain.

I phoned the Marsden, but they could only recommend I take a mouthwash – which nearly took the roof off my mouth.  The most sensible advice I had came from the nurse team at Cancer Research UK.

Luckily in the meantime however, I had emailed Evolife.  Back zinged an email from them saying they were sending samples of Evomucy for me to try.  This arrived at 9 am the next morning by DHL, and the first time I used this mouthwash I could feel the ulcers closing up.

So read what Cancer Research UK says, but if you want practical help – trust the French!

As they say, “one of the nastiest side effects is an attack on the mucus areas of the mouth.  This often results in painful and unsightly mouth ulcers that make it difficult even to eat or drink (they can say that again!)

Evolife make two products – Evomucy Mouth Wash, which you use as a mouthwash for about 1 – 2 minutes;  and Evomucy spray – which they say is particularly refreshing. This comes in a small spray canister which is easy to carry around in your pocket or handbag, and they advise using this 3 to 6 times a day.

Ask your hospital or nurse if they know about this – I know St. Mary’s Paddington knows about this, and other hospitals are gradually following.  Or contact www.feelbetterduringchemo.com

The Cancer Research UK Nurse’s reply was:

It would be helpful if you contact your original hospital team, or else your GP to ask them about your mouth ulcer problem. A doctor should have a look in your mouth to confirm the ulcers and check for any signs of infection such as oral thrush.

They can then prescribe medications to help speed up the healing of the mouth ulcers and prevent further episodes. Usually, certain mouthwashes, and if needed antifungal drops or lozenges are prescribed. There are mouth gels and mouthwashes such as Difflam which contain small amounts of local anaesthetic agents that will help reduce the pain and soreness. Painkillers such as paracetamol may also be suggested to help as well.

We have a section on mouth care on our CancerHelp UK website, and the link is here,

http://www.cancerhelp.org.uk/help/default.asp?page=11036#infect

If you would prefer to speak to one of the nurses directly, you can telephone us on 0808 800 4040.  We are here from Monday to Friday, 9am-5pm.

But the French attitude was so much more helpful.  I was known to them, so obviously they could send me a product without seeing me first.

To get information from the Marsden I had phoned them at 9 am – and they didn’t call back until 5.30 – and then gave me erroneous advice.

And as we all know, Doctors only get 6 QOFs for looking after cancer survivors, so we are low on their list of priorities – unless we are very lucky.  Mouth ulcers sound very low on priorities, unless you happen to be suffering from them!

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Coping with nausea as a side effect from cancer drugs

Description unavailable

Watch out for chillies, peppers etc. Flickr

Helping with Nausea and other

side effects

 

Everyone complains about nausea as a side effect.

This is one problem that doctors and nurses are keen to deal with – but sometimes you just don’t want to take another pill.

Or, sometimes you get no warning, and can’t ask for help.

It hit me  suddenly when walking along – and being sick in the gutter is not to be recommended.  Passers-by tut tut and say “she’s drunk”.

If you get nausea attacks when out and about, you’ll obviously carry wipes.  I use Equilibra ones, as they contain Aloe  Vera, so don’t dry my skin and make it feel tight, like so many do.

And we are not alone – the late Patrick Swayze described side effects of chemotherapy as “hell on wheels”.

Causes

Fellow patients confirm that most likely triggers are seafood, smoked food, peppers, chillies, spices – that type of thing.  Not surprising, I suppose, because they can upset the stomach.  So watch for:

Smoked salmon / trout / chicken/carpaccio and other smoked and dried meats

Seafood – crab, mussels, lobster, winkles, etc.  (but white fish, salmon etc is usually OK).    Always buy organic salmon if it is farmed salmon (Waitrose supply this), as ordinary farmed salmon can be fed with pellets that trigger nausea.

Peppers – (especially in soups such as Gazpacho) – stews and salads

Chillies – and that meant anything with a chillie content.  At  parties I became very, very cautious when the eats came round.  This is good for the waist-line!

Spices – So this meant that Indian and Eastern European (especially Hungarian) food had to be treated with a great deal of caution.  However, I found Lebanese and Turkish food, if you were careful, was OK.  And for some reason Saffron didn’t cause any problems, so saffron rice was always a safe option.  Chinese, Thai, Malay and similar food too can have chillies – but there is plenty of choice without spices – and herbs such as lemon grass give a wonderful flavour.

Soup – watch ingredients, as often chefs will spice them up (even the ubiquitous tomato) with peppers, chillies etc.

Some people find garlic and onions can set them off.

But Chocolate was perfectly OK for me – darn it!

Treatment

Most nurses have loads of ideas for treatment;  ginger and its derivatives seems a perennial favourite (see below).

My ‘trick’ was Tonic Water – the ordinary Schweppes variety.  This was an old remedy I used to dose my passengers when I worked as a Tour Manager, and anyone who complained of travel sickness was given a bottle to drink.  It worked 99% of the time, and often worked on me this time and prevented a potential sick attack.

Tip

Carry a packet of antiseptic wipes – very useful if you are sick away from home.  I use Equilibria as they contain Aloe Vera.

GINGER
For years anecdotal evidence said ginger was good for nausea. Now the University of Rochester Medical Center has done trials on chemo patients, and researchers report that early use of ginger supplements, in combination with traditional antinausea drugs, significantly reduces chemotherapy-related nausea in patients with cancer.

“We found that patients who received traditional anti-nausea drugs along with ginger supplements prior to
chemotherapy experienced significantly less nausea associated with their chemotherapy,” explained Julie
Ryan, PhD, MPH, assistant professor of dermatology and radiation oncology at the University of
Rochester and the study’s lead author. “However, as with all supplements, patients should speak with
their doctors first before taking ginger.” Doses of 0.5g and 1.0g doses had the greatest benefit.

So if it works for chemo – why not hormonal drug side effects?  Discuss with your Oncologist/nurse, and they can get details of the Randomized Study at University of Rochester Medical Center, Rochester, NY, USA.

And if you get a sore mouth (sometimes known as chemo-mouth) from being sick, a quick spray of Evomucy used to settle the soreness – for me.

Enhanced by ZemantaTip – if you live in a hot climate, you can just cut off tip of aloe vera leaf and squirt it out.  Otherwise, any chemist sells it.