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
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.
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......
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.
Head & Neck Cancer Diary & Radiotherapy After Effects
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