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Head and Neck Cancer Radiotherapy

Pauline's Cancer Diary - Page 5

Photos of Head and Neck Cancer Radiotherapy

Taste Problems Week 7

By Pauline Weston Thomas

 

Pauline's Cancer Diary - Page 5
Photos of Head and Neck Cancer Radiotherapy Pictures
Immediate Post Radiotherapy Taste Problems in Week 7

On this Head and Neck Cancer Diary Page 5 you will find:-

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Immediate Weeks after Head and Neck Radiotherapy

After my radiotherapy to treat my occult (hidden) primary head and neck cancer (SCC) finished I spent about 7 weeks in bed. The fatigue was overwhelming.

Before you wince at the photographs I should point out that I am very fair skinned and have avoided serious sunbathing for about 15 years.  I think anyone who is darker skinned would tolerate radiotherapy more easily and perhaps be not so badly affected.  These photographs probably show the maximum burning to expect.

Pharmacists liken radiation burns to a chemical burn rather than a sunburn.  The burns were extensive and on the Saturday directly after my hospital radiotherapy treatment finished on the Friday, district nurses called twice daily for about 3 weeks until the wounds were healed enough to be left without a dressing.  I also changed the dressing in the middle of the night myself or applied more Intra-site gel to the dressings.  In my case the pain relief from a fresh dressing only lasted about 8 hours.

Usually at night I found the pain relief improved by properly doing a new dressing from scratch and cleansing the burn with saline solution first, whilst taking a liquid morphine dose at the same time.  I put out all the materials I needed in my bathroom, although leaving them in sterile packaging before retiring to bed.  I also measured the morphine out ready for my 2 or 3 am dose before going to bed.

The pain always woke me within the four hours between doses.  As the doses had to be measured I kept a notebook of all prescribed drugs I was taking, to ensure I did not overdose or take too much of anything especially paracetamol in a 24 hour period.  Also when you are half awake you don't want to be fiddling with measuring out medicines, so seeing to the dose measurement when wide awake makes better sense.  Doing the record keeping also helps when you need to discuss the drug usage with your general practitioner and later need to reduce the drugs and wean yourself off them.

The pictures below show the changes and the gradual decrease in the burn redness.  The side that had 1 week less treatment suddenly started to heal and you can see a noticeable difference.  I continued to take the prescribed morphine for 2 weeks until the burns stopped being raw.  Once the rawness had gone Solpadol was sufficient to control what was uncomfortable rather than painful. I also developed bronchitis in week 2 post radiotherapy and I think the prescribed antibiotic helped speed the burn healing process.

Today some 9 weeks later as I write this, there is basically an average tan mark which has not totally faded yet, but is much reduced in colour and easy to cover with face foundation.  My consultant says there will always be an element of freckling in the area. I think the condition of the skin is good and I daily apply face cream to it.  I really believe that creaming up to 6 times a day with the suggested aqueous cream during therapy and then later when the burn wept using the recommended Intra-Site gel dressing has made all the difference to the texture of the skin. No sign of the woodiness I had read about at all.

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I also believe I lost virtually no hair because of the Chinese medicine I took for 17 days.

One problem has been feeding.  My taste buds were destroyed by the radiotherapy and as 30 pounds fell off me I knew that some form of artificial feeding was essential.  A few weeks later on the 28th October I was admitted to hospital and had a naso gastric tube inserted and was fed Nutrison Multi fibre feed in hospital for a week.  I continued with the naso feeding at home for 4 more weeks.  Although I've been off the tube a week its fair to say I'm living off milky drinks, like hot chocolate and Ovaltine and milky puddings, like rice pudding and crème brûlée.

Most foods still taste awful, yet I sense a slow taste improvement and live in hope that one day I'll get some taste back.  Reports I've read on the internet suggest that taste can take 6 months to a year to come back for the lucky ones who get taste back.  I do try odd mouthfuls of new foods, but although sometimes food tastes ok for a mouthful or two the taste has a knack of changing to something truly horrible without any warning. I long to eat fruit, but I can taste the chlorophyll in it - it all tastes green to me after a few bites. 

Still 6 weeks ago I could not eat rice pudding without spitting it out.  So being able to eat it has to be progress.  Looks like my Christmas dinner is already planned - not a cardboard tasting bird in sight!

I hope seeing these photographs will help those about to face radiotherapy on the neck and head.  The burns photos shocked me when I first saw them because I had become gradually used to the burn developing.  But here is the proof that it did improve rapidly in the 2 weeks post radiotherapy.

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 Photographs for First 2 Weeks Post Radiotherapy.

Click thumbnails

Picture of radiotherapy neck burns - 3 days after finishing radiation treatment. Photo  of neck burns  post radiotherapy 3 days after treatment finished. Photo  of  post radiotherapy neck burn Photo  of neck burn  post radiotherapy and covered in dressings

3 days after radiotherapy stopped

4 days after

Burn Dressing

Photo  of  post radiotherapy neck burns 7days after treatment finished Photo of post radiotherapy neck burn 8 days after treatment finishediotherapy Photograph  of neck burn  9 days after radiation treatment finished. Photo  ofpost radiotherapy  neck burns  10 days after treatment finished.

 7days after

 8 days after

9 days after

10 days after

Post radiotherapy burns 11days after radiotherapy finished. Photo  of neck burn  post radiotherapy - 12 days after treatment Neck burns -13 days after finishing radiotherapy treatment. Neck burn pictures 14 days after radiotherapy finished

11 days after

12 days after

13 days after

 14 days after

Photo of neck burns 15 day after radiotherapy Photo  of neck burns 16 days after radiotherapy

Radiation burns - Photograph of radiotherapy neck burns 17 days after completion of radiotherapy cancer treatment.

15 days after

16 days after

 17 days after

Compare day 3

Photograph of faded neck burns 6 months after completion of radiation treatment.

 

In this last picture above of day 17 I really began to feel the burns were healing well.

I have inserted day 3 next to it again for you to see the huge improvement.

All thumbnails can be clicked

Lastly, here I am 6 months later in late April 2003. Still evidence of a slight freckled mottled glow, but nothing awful.

People have asked why I smile in the pics with that burn - my answer - it's natural to smile when a camera is pointed at you.

Pictures updated 18 June 2003, 1 yr after initial diagnosis.

I want you to know I do feel much better with time some 10 weeks later.  I feel I turned the corner at week 8, but until then I spent most days in bed.  When I first went out I was very frail, but by going out daily for an hour or so and walking around town I have built up enough strength and stamina to shop for 3 hours!  You won't be immediately better when the radiotherapy finishes, but I do believe that with time many things will get better, although some things will never be quite the same.

Whether or not this has been successful I cannot know. Life has to be one day at a time now, some days are good, some are full of fatigue.  I do know though, that despite the eating and taste problems I feel much more my old self of eighteen months ago. I also know that this illness has made me value even more my husband who I always thought was wonderful, but who has proved himself to love me in sickness and in health and has been a tower of strength and help to me.  Thank you Guy my hero! 

Keep us both in your prayers reader please.

Update Friday 22 March 2003 - Taste Bud Recovery

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A couple of weeks ago, about 20 weeks after radiotherapy finished in October I began to taste just a few more things and felt a sense of savoury awareness return.  My taste is still very poor and the texture of food is still often disgusting.  Even though I list a few things below this taste still varies day by day and some days foods that were OK the day before are inedible the following day and have to be left for a week or so before trying again.  I feel now there is some hope that with time the taste buds will return for some foods, if not all foods and that soon I will be able to try eating a carefully selected meal out.

For those wondering when their taste will return - at this time I am able now to drink coca cola which acts as a great mouth cleanser, but goodness know what it does to the teeth!  These are not gourmet foods, but I can eat a 1 egg plain soufflé omelette, manage a single faggot in gravy (chopped liver), eat jaffa cakes or shortbread dipped in tea, eat small pancakes cooked in butter with lemon or orange and sugar, milky bar creamy dessert tubs, small amounts of corned beef, but not ordinary meat, home made carrot, leek, fennel and celery soup without any thickening like potato, about 2 tablespoons of fried rice, apple pie and cream although the apple leaves my mouth very dry after and I have to leave the pastry.

The one food that has always tasted the same is about 2 tablespoons of laver bread from Swansea fried in oats and butter.  I am particularly keen to eat the laver bread (boiled Welsh seaweed) in the hope that it prevents thyroid problems that can happen after head and neck radiotherapy.

With effort and a cup of fluid like tea, I can manage a single extra thin buttered rice cake with marmite.  Fluid is essential to help all food go down.  Strong flavours are preferable, but spicy foods like mustard dip or tomato chilli salsa are so strong that my taste is overpowered for several hours that I cannot eat them.

That's really about it in addition to the rice pudding and milky products.  So whilst the number of things I can eat has risen to about a dozen items and it's still not huge, it has added some welcome savoury variety and helped my weight stabilise this past month. But nothing tastes like it did before treatment. 

Food is now a huge disappointment to this former gourmet.

In total I have lost 4 stone since June 2002 and the only bonus has been shopping for smaller clothes, although buying smaller bras regularly has been something of an irritation when the size is a mystery week by week and has proved quite costly.  Ironically my husband has also lost two and a half stone as with no sense of taste I've found food preparation difficult.  We have both concluded it's not so much what you eat, but how large a portion size you take.  My portions are now very small folks.

By early evening I do feel tired and that may be an after effect of radiotherapy or due to poor nutrition, but I resist a day nap to ensure night sleep.  My voice is deeper than it used to be and I dry up easily on the phone or during conversation and sometimes in cars where certain heaters dry out the mouth rapidly.

I think I will always have light tan in the region of the radiotherapy.  Two acquaintances who knew nothing of the treatment asked me last week if I had been on holiday!  I shall put up a picture of the faded tan in the next month or so.  It really is light now compared to the photos above, but there are now a few broken veins in the area.

On the positive side I am doing things to my fashion-era website and have added many new pages including libraries in each section. Currently I am writing an E-book for the site. Despite odd off days I feel like doing things again and going places.  I have energy again.

I pray they got it.

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Dental Work Tooth Extraction After Radiotherapy - Sunday 30 March 2003

Last Monday I had a cracked back tooth removed.  It's been cracked for some time, but I have hung on to have it removed in the hope that the tissue in the mouth was in improved condition compared to immediately after radiotherapy.  I had been dreading the extraction as months ago I read up on Osteoradionecrosis.

However it appears that like all aspects of dealing with cancer and treatment after effects, the development of ORN is a wait and see feature and happens according to the individual. You can find great links to ORN on Barry's BDS site. The link info there explains it far better than I can and in the most graphic way.

My excellent Droitwich dentist Peter Davis checked with the hospital if they should remove the tooth or if he could. They were happy for him to extract it gently, without causing trauma, if antibiotics were given.  As I know and trust Peter Davis very much, I decided that he would be preferable.  I had an antibiotic drink an hour before the extraction and my dentist removed it very gently and I have since taken antibiotic tablets for a week.  Kindly the staff at Peter Davis have checked regularly by phone to see my progress for better or worse and I am pleased it has been for better.

Ironically I am eating better since the extraction.

I tell it now as it may need a mention at a later date if there are any complications. Anyway so far the extraction appears to be healing although the cranial pain I have had all week has been as bad as when I had my jaw operation in 1981 and far worse than pain after extractions normally used to be. 1800mg of ibuprofen per day helped.  The bone pain does seem to have subsided this weekend, but the area is still very tender.  Wait and see - again......

To next page.

Footnote 1:- The unit of radiation measurement is the Gray (Gy) Other units include the centiGray (cGy) and the rad. One cGy equals one rad. One hundred cGy equals one Gray and so, 60 Gy equals 6,000 cGy.  Although the term rad isn't used now, 6000cGy equals 6000 rad which is why people who have had radiotherapy refer to it as having had rads. The radiotherapy is delivered in fractions.  For example I had 30 days of treatment of 2Gy or 200cGy for 5 days a week which totalled over the six weeks (minus rest weekends) 6000cGy or simply 60Gy. 

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Head & Neck Cancer Diary & Radiotherapy After Effects

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